Franki’s Story

My story may seem familiar to you. You may find there are bits and pieces you can relate to, or may have experienced yourself. But none of it was familiar to me when it started at the very young age of twelve. This is a story about my experience with something we may all have once referred to as ED. Despite my struggles with ED, my experience has made me into the person I am today. Now to those who don’t know what I’m referring to when I say the name: ED, I’m talking about my eating disorder; anorexia nervosa. When telling my story, I am going to refer to my journey as this name, for it was something that stuck with me throughout the whole experience; both the traumatic parts and the rewarding ones. I am going to share as much as I can for the time I have with you all and hopefully you will find at least one piece that resonates. When thinking back on this journey and the pain and distress that it caused me, I still push aside any feelings of resentment since I look back at it as a deep learning experience.

To start off, I am going to tell you all a little bit about myself. My name is Francesca (Franki for short) and I am a rising junior in college. I am a very independent, determined, and strong-willed young woman who is always striving for better. Now, I’ve purposely used the word “better” because the word “perfection” got me into the whole mess with ED in the first place.

Ever since I was a small kid, I was always told that “Nobody is perfect”, but my brain did not agree. I believed there really was such a thing as a perfect person, a perfect body, a perfect weight, a perfect life; news flash: I was perfectly wrong. As a kid, everyone praised my confidence. I didn’t much care about what people thought about me and did whatever I wanted to; I exuded positivity, love and the ability to speak freely. My parents often shared a story that has stuck with me to this day. Wherever we would go, I would tell everyone that I loved them; and when I say everyone I mean everyone: grocery store employees, restaurant waiters, strangers walking by me on the street, I loved everyone. I was such a happy kid. I found the joy in little things. I loved to entertain, to make countless friends and make people laugh. That was until I entered the incredibly scary world of middle school.

Middle school meant kids getting older, personalities changing, and most importantly bodies changing. I was already more developed than my friends in the growth sense, and that was something that really freaked me out. I started to compare myself to my peers, who genetically speaking were completely different than me. No matter how hard I tried, I wouldn’t and couldn’t look like them. Growing up I played soccer and danced competitively which consisted of a group of girls with all different body types working together. Naturally, I compared myself to these girls in my ability to do these activities, while also and sometimes even more diligently comparing my body to theirs. I found that I was angry and frustrated with myself that I did not look like my peers. This affected the way I played soccer and danced because I was constantly striving for that unrealistic level of “perfection” in all aspects of the world.

My comparison to other people got so bad that I was at the point where I thought that I had to change my lifestyle and mindset in order to be just like them. This was the first step that led me into a dangerous illness and when ED entered the picture. My mood started changing. I wasn’t the happy, confident, loving girl that I used to be because I was angry or in this case…hangry. I found myself getting frustrated at small things that I used to never even think twice about. I also found myself harming relationships because of the way that I treated people while I was struggling with this illness; Here’s the scariest part of all: I didn’t know how to stop. The night that my parents found out that I was struggling was something I would have never expected. It happened at a dinner with my mom, my best friend and my best friend’s mom. We planned this dinner date as a fun night to go out in Boston and get delicious food before going to a dance performance that we had all bought tickets to. As we were beginning dinner, my best friend noticed the fear and shame on my face. My mom, oblivious at the time that I had been having these struggles because she was not with me at lunchtime at school, had a confused look on her face. And that’s when it all came out. “Franki has been dealing with something, and she needs help”, my best friend blurted out to all with no hesitation. My face got red, my heart dropped. I was caught. Concerned faces were all that I could see at that moment and I didn’t know what to do. I immediately ran to the bathroom and started to cry, my best friend following shortly after me. The rage and betrayal that I felt towards her at that moment is something that later turned into gratefulness. No matter how mad I was at that moment, she had saved me. Out of the blue and in front of everyone, she said the words I was so afraid to say myself.

Immediately after that night, my parents thought that it would be a good idea to see my doctor. The thought of this terrified me. What would they say to me? What would they make me do? As we parked the car and headed into the doctor’s office, I felt as if my heart was beating out of my chest. When getting my vitals taken, the fear in my parents’ eyes brought tears to my eyes. What have I done? Something that seemed so small to me had turned into something huge. I remember how awkward the car ride was home. No words were spoken, and the only noises that were coming out of anyone’s mouths were sighs and reactions of disbelief. It’s as if everyone was frozen in place.I did not want to talk to anyone. I wanted to go into my room, alone, and think about what would happen from here. What would be different? So when we got home I went to my room, closed my door, and shut my eyes; unknowingly that I would be in this predicament for a while with ED by my side.

When I got into my room , I tried to think, but my mind was racing. I was not only scared, but I was disappointed in myself for not seeking out help because I knew that my support system was stronger than ever. However, I was sick, and I needed this help to bring me back to the strong, happy, and confident girl that I once was.

I needed an action plan. I needed to get help immediately, so my parents raced me to MEDA after serious consideration between different Eating Disorder treatment facilities. And after all these years, I still look back and know that this moment, this relationship with MEDA, was the exact first step needed in my recovery. I found it liberating to talk about what I was feeling with people other than my parents and opening up to someone that I formed a close relationship with. I never felt judged, and I knew that the people there wanted to help me become the girl I once was, and even more importantly, I knew that I wanted to be that girl once again too. I’ll never forget the words used when speaking to me; “you’ve lost your sparkle”. I found those words to be the most relatable of all. My sparkle was missing. It was hidden beneath the anxiety, the worry, the comparison to others. It was hidden by ED. After many hours talking to my individual therapist, my eating disorder brain was telling me that I was getting better; however I wasn’t. The thing about ED is that it tricks you into thinking things that aren’t true; which is how I got in this messy situation in the first place. I knew I needed to get better, but I felt hopeless since it wasn’t happening quick enough. I worried that all of my hard-work and countless therapy sessions weren’t making the ED voice go away. I came to realize later that it takes much longer than you think to change the way you process things when that voice is ever present and directing you to do the opposite of what feels healthy.

I continued to meet with my individual therapist and then was told that it wasn’t enough. I now needed to meet with a nutritionist, a clinical psychiatrist, a family counselor and enroll in an intensive outpatient program where I would go to a facility 3 days a week for 3 hours each day. Yes, I know, it was a whole lot of doctors and a whole lot of therapy. As a 12 year old, going to this intensive outpatient program was extremely scary being surrounded by people much older than me and the fact that I was being told to meet with all of these different professionals made me think there was something even more serious going on and that was an overwhelming feeling. I knew that I needed to look at myself in the mirror and declare that something needed to change. This needed to come from within. I met with a series of doctors. Some were great and some really understood me. And some weren’t the right fit for me. I later learned that this happens and finding someone you connect with was essential. MEDA was there throughout like a constant drumbeat of support while I met with the rest of my team.

At one point I changed psychiatrists to find someone who was better suited to my needs and the first thing he said to me which stuck with me throughout my whole journey was: What does recovery mean to you? When these words came out of his mouth I was stuck. How was I supposed to know? I was a kid with no past experience of struggles and recovery to lean on. I faintly remember my joyful way of living but it was so distant I didn’t know how to get back there, let alone describe it. I was severely struggling at the time and didn’t know what recovery meant to me, or what I would gain from being fully recovered; which I can confidently tell you all about now.

What does recovery mean to me? As a 20 year old girl who has been in recovery for 8 years now I can say that not all recoveries are the same and not all recoveries are linear. Like many people, I had numerous ups and downs but it was important to me that after the many downs that I faced, and there were a few, I continued fighting because I wanted to recover. One of the things that have always been important to me was going to every event with my friends. Since I was a little kid, I always had something called FOMO which I know a lot of people my age still struggle with. When I was struggling with my eating disorder, there were many times where I had to miss out on certain events such as going away on a weekend trip to Cape Cod, or having dinner with my friend group because I wasn’t to be let out of sight with my parents regarding food intake; That was when I needed to re-feed and every bite was important for my health. I remember when my best friend had asked me to go away with her to visit her Cape Cod house for the weekend, and the disappointment that I felt when my parents told me that I couldn’t go because of what I was going through at the time and I was obligated to go to my outpatient program 3 days each week. I wasn’t even able to go to my P.E. class because I was too sick to do so or eat lunch with my friends because I had to sit with my guidance counselor in a small room to make sure that I was eating every day . Now that I am fully recovered 8 years later, I have the privilege to experience these events with my friends whenever I want, without the fear that I won’t be “allowed” to go because my physical well being could be in jeopardy. I am free to live my life, within reason of course. That was a huge driving factor in my recovery. The feeling of freedom. Knowing that I could see my friends, enjoy meals with them, and do what teenagers are developmentally inclined to do. The thing about freedom is that I get to decide. If I want to go hang out with my friends, I go. If I don’t, I won’t. The other thing about recovery is that I feel good. I feel strong and healthy and exercise is no longer a means to a number on a scale, but it’s a means to having the energy and strength to be at my best everyday. Fueling myself is a joy and a privilege that I don’t take lightly.

I am also a much happier person without the nagging voice in my head telling me that I need to change.  My relationships have become stronger since I am able to be my authentic self. That gives me the strength and determination I had been missing for years. As I talked about in the beginning of my presentation, I was born to love everyone and anyone, no matter who it was, but it wasn’t until now that I grew to love myself. And that is what recovery means to me. Loving myself, being there for myself, and recognizing the power and strength from within that helped me get through this traumatizing experience. There was a time where I thought I could never get over this hump, and that I would live with an eating disorder forever, but with much needed therapy, inner-strength, and a support system that I am so grateful for, I was able to return to being the confident, happy, and loving girl that I was born to be. Recovery is possible. I finally believe that now. Although there may seem like there is no light shining at the end of the dark tunnel that you may be facing right now, I am living evidence to show you that you will get there, and I can confidently say that I am so happy to be at the place where I am today talking to each and everyone of you, hoping that my story can make an impact and that you can start looking for your sparkle once again.

 

Melz’s Story

I suffered from an eating disorder for over 29 years before reaching full recovery. I was 11 years old the first time someone commented on my body in a way that made me feel embarrassed and aware of how others saw me. My older cousin made a comment about how big my butt was in front of his friends and they all laughed about it. I felt ashamed. It made me think that’s how the whole world saw me. It made me feel like it was wrong to have a big butt or a bigger body. In that moment I laughed with them, I laughed so they wouldn’t see the shame I felt, so they wouldn’t see that all I wanted to do in that moment was to disappear. I carried that shame for 2 years before my ed first developed.

Being on a diet in my household was a normal thing. My parents were always on the latest fad diet out at the time. So it was easy and acceptable for me to diet too. My parents were always trying to change their weight and I also wanted to change my body to get rid of the shame I was still carrying from my cousin’s comment. My eating disorder started out with dieting. I was a thin kid who had no reason to diet, yet because of my cousin’s lingering comment, I thought I wasn’t thin enough to be liked. I had a really rough childhood and my self esteem was already really low. It felt like the only thing I had of worth to give to the world was my appearance. I was often complimented on how pretty I was and told I could be a model. So that’s what I wanted to be when I grew up, I aspired to be a model. I constantly compared myself to the models in magazines and on tv. I knew if I wanted to be like them then I needed to look like them. This began a cycle of constant dieting for me. I became obsessed with trying to be model sized. Diets always failed which made me feel even worse about myself. I felt like I had no will power. At the time there were a lot of tv shows and movies on about eating disorders. This is actually where I got ideas about different ed behaviors. The media seemed to be telling a lie though. Every actor or actress on film were in thin bodies. And if someone in a larger body was portrayed, they were either made fun of and looked down upon, or they were the comedian. The media made it very clear that the only way to be accepted in society was to be in a thin body. So even though the media was trying to spread awareness about eating disorders through tv shows, it sent mixed signals and it actually taught me about behaviors I wasn’t even aware of. A few years into my ed my parents discovered what I was doing in the bathroom after meals. My mom heard me purging and got really mad at me, yelled at me and made me sit with her for 30 minutes after meals. This was her way of solving the problem. But this didn’t solve anything. All it did was make my ed more strong and intense and taught me how to be even more sneaky. What I wish she had done was to have compassion for me and taken me to a therapist to get help. I still found ways to compensate. . One day my dad found out. . Once again my mom screamed and yelled at me as well as my dad this time. But this time my mom did take me to a therapist. The only catch was she said she was going to sit in the room with me and the therapist. SO I told her that I wasn’t going to say a word then and it would be a waste of time. And it was. I refused to speak and sat silent during the entire session. Mom never took me back again. I would have talked to the therapist if my mom wasn’t there too. I really wished my mom would have let me see the therapist by myself. I could have talked to them about a lot of things I needed help with. But no way could I talk to my mom about any of it, because of the way she reacted. I hated myself and my life. My parents were super controlling, and the ed gave me the illusion of being in control. I was not about to give up what little control I did feel I had. By the time I was 16 the ed had full control of me though. I was miserable all the time. I went to modeling school and was told I needed to lose a specific amount of weight. I dropped out a week before finishing because I couldn’t find something to wear that I looked thin enough in. I spent over an hour trying on every outfit I had only ending up in a complete meltdown sobbing and screaming. I was so embarrassed about how I looked that I decided to just not go back to the school. My life took a drastic turn when I was told about a certain street drug that would take away my appetite. I actually blame my drug addiction on my eating disorder. I started out as using drugs to help me not eat, but when I felt how good I felt for the first time in my life, the first time I felt like life was worth living. I had been wanting to die since I was 10 and was actively suicidal since age 13. The drugs made me forget about wanting to die. That took control of my life for the better part of a decade. By my mid 20’s I was finally able to get clean and sober through the help of a 12 step program. I was trying to focus on turning my life around and by working on myself I started to feel better and even my ed seemed to disappear for a quick minute. I wasnt even suicidal anymore. But it didn’t take long for my ed to creep back in again. I felt it was manageable for me though. In comparison to how it was in my teens, I felt like it wasn’t too bad. Thats the thing about an eating disorder though. It is always trying to convince you that it’s not that bad. It likes to compare what you do to what other people do. And from what I had seen on tv shows that portrayed eating disorders, I thought I didn’t really have an eating disorder, because things were not nearly as bad as what I saw on them. That’s the thing about the media though. They only show you worst case scenarios. But that is only a fraction of what eating disorders really look like. It doesn’t have to look a certain way before you seek help. Then things took a turn for the worse in my mid 30’s. I blew out my acl snowboarding and had to have surgery. I was a pro level athlete at the time for snowboarding and skateboarding. So I made it my mission to come back stronger than before my injury. This was the kindling my ed needed to start a raging inferno. I engaged in unhealthy amounts of exercise to make a comeback. But instead the focus also turned to my appearance and how my body was changing. So instead of focusing on my acl recovery, I began to become obsessed about what I ate or did not eat and what the number on the scale read. I got really into what was called clean eating. What a fancy way to label just a different kind of diet. No food is dirty. But there I was getting obsessed about counting my macros and restricting more and more. This actually hindered the recovery of my knee as my body wasn’t getting the proper amounts of nutrients to help it heal. It didn’t take long for my ed to get out of control and for me to lose my mind. I was so miserable I had thoughts of wanting to die. And that was the red flag for me to reach out for help.

I live in a remote rural town and was working a full time job at the time. There was no help for ed’s in my area. I did some research and saw some programs offered some support groups at night. I was hoping to be able to drive the long distance after work for treatment, which would have been about a 2 hour drive one way. I made a call to see about getting into one of these programs. I had to have an assessment over the phone. When they called me back they told me their team recommended that I needed a higher level of care. They said I needed to be in a residential, which is a live in program. I couldn’t imagine taking time off work to get help. I begged to be let into their outpatient program. But they insisted I needed more help than the outpatient program could offer. My first thoughts were that I was not sick enough for that level of care. Of course this was just the ed’s way of trying to keep control. Also I had so many worries about that, like would I lose my job? How would I afford taking time off work? How could I afford treatment? I thought to myself about how miserable I was and how I wanted to get better so I decided I was going to have to take a leap of faith and put my trust in the professionals. So I decided to go. I was privileged in the fact that I had access to care, as my health insurance covered the cost of most of my treatment. Not everyone has access to care. The hardest part of being in treatment was how hungry I was all the time, no matter how much I ate. It took a really long time for my body to realize it was getting enough food finally. I learned a lot about diet culture and the lies it tells us. I was introduced to the all foods fit philosophy and HAES(health at every size). I learned to differentiate my own voice from the ed’s voice. This was super helpful because once I was able to recognize what the ed was trying to tell me versus what I wanted, that’s when I was able to take some of my power back. The eds voice told me lies, it fed me diet culture propaganda. Once I recognized its voice I was able to challenge what it said to me. I learned coping skills through the use of DBT and CBT. It was really hard for me to accept my changing body though.. When I left residential, I was filled with knowledge and tools to fight my ed. But I still held on to the belief that there was a safe way to change the way my body looked. And it was because of this belief that I relapsed into ed behaviors within a week of returning home. And since I live in a rural area, I wasn’t able to step down to php (which stands for partial hospitalization program) and iop (which stands for intensive outpatient program. which is what was recommended for further treatment. I did get set up with a dietitian who I saw virtually and a therapist who supposedly could treat ed’s. The dietitian was amazing and I am forever grateful to her for all her help. The therapist however caused more harm than good. I can’t stress enough the importance of finding a therapist who is properly trained to treat eating disorders. The therapist I was seeing was trying to tell me the diets she was on and recommended for me to try. She was clueless about any of the info I had learned from the true professionals in regards to how to treat an ed.

Some of things that I did find helpful however were to unfollow all the social media accounts that promoted diet culture, weight loss, changing bodies “etc”. And to follow all the social media accounts that were recovery focused. This helped me out when I scrolled my instagram by filling my feed with helpful reminders. I also was linked up with an online ed support group that met once a week via zoom. This group was a big help too as it was peer support led by a therapist who was an ed specialist. I did struggle to attain full recovery though because I still held onto the idea that I could change my body to look the way I wanted it to.

Then covid hit. That’s when things got really bad for me again. Having to work in a fast paced job wearing a mask put my anxiety through the roof. This is when I learned that I even struggled with anxiety on a day to day basis. I was just so high functioning that I didn’t know how high my anxiety actually was until it became unmanageable. This is a big reason why I relapsed into my ed big time. It was an old coping mechanism that I relied on to keep my sanity. I was also diagnosed with generalized anxiety disorder at this time. It didn’t take long before my dietitian told me that if I didn’t go back to residential, she was no longer ethically going to be able to see me. One thing Im grateful to myself for was my honesty to my treatment team. No matter how bad things got for me with my ed, I was always honest with my team about how things were. This helped me the most throughout my recovery. I had a choice to make, either go back to treatment or lose my dietician and give up on getting recovered and let my ed take over full control again. I chose to not give up on myself and once again put my trust in my treatment team to know what’s ‘best” for me. So I went back to residential. This time I realized that I was going to have to make another choice. If I wanted any hope of achieving full recovery, I was going to have to let go of the idea of changing my body and accept my body wherever it was going to end up at its set point. I learned all bodies have their own set point for weight, that is where it lands ideally. I realized if I wanted full recovery, then I was going to have to accept my body may never be what I want it to look like. This was a scary realization. But I realized that this is what held me back from full recovery the last time. So I took a leap of faith and made the choice. I chose to chase full recovery. And that’s when insurance decided for me that I didn’t need to be in residential anymore. I was not ready to leave. I felt like I just finally was getting somewhere. I was afraid I wasn’t ready to be on my own. But I was sent home 2 days later. I knew I needed more support than what I was able to get at home. So I asked my Aunt if I could live with her for a while so that I could attend a PHP program. Thankfully she said yes. So, a week after being sent home from residential, I was able to start a php program. I did well for a while but whenever trauma was addressed I would fall backwards and my ed would quickly spiral out of control. Trauma, remember how I said I had a rough childhood? Trauma, remember how I said I had a rough childhood? There was a whole lot of trauma sprinkled throughout my life. From finding out during a fight between my parents that my “dad” was not my biological father and that he had actually been killed when I was an infant, to witnessing domestic violence between my parents and their eventual divorce leading to separation from my siblings, to prolonged childhood sexual abuse to multiple sexual assaults to tragically losing my aunt and even more as an adult…there was just a lot. The experts say abuse is a significant risk factor in the development of ed’s.

I finally stepped down to IOP but then again I was like playing a game of whack a mole. Whenever trauma was addressed my ed got worse and I ended up needing a higher level of care. I then had to return to PHP. Then at some point I again needed residential. It was brought to my attention that I needed a place suited to address trauma and the ed simultaneously. Whenever trauma was worked on, it triggered my ed and trauma was at the root of why I had my ed. So off I went to another state to a program that was supposedly able to treat both simultaneously. However that was not the case. Each time trauma was addressed, the ed spiraled and we had to start over getting the ed stabilized before trauma work could be done. Again, another game of whack a mole.

What made it so challenging to address the ed and the trauma simultaneously is that it was triggering other parts of me when trauma was brought up. 2 years prior to seeking help for my ed, I started seeing a therapist on my own and was diagnosed with DID, which stands for dissociative identity disorder. DID, formerly called multiple personality disorder, develops as a childhood coping mechanism. To escape pain and trauma in childhood, the mind splits off feelings, personality traits, characteristics and memories, into separate compartments which then develop into unique personality states. Each identity can have its own name and personal history. These personality states take control of the individual’s behavior, accompanied by an inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness. So I had these other parts of that were so traumatized that it seemed impossible to recover from the ed without working with those parts specifically. Also I wasn’t the only one in my system that struggled with the ed. When I say my “system”, I am referring to all the parts who collectively make up the whole of Melissa, the bodies name. So I had to find a way to work with these other parts and get us all on the same page for recovery to stick. One of the parts would revert back to engaging in ed behaviors when we talked about trauma. One of the parts got so triggered in this out of state program, that they expressed being suicidal and then they ran away from the facility. This automatically gets you kicked out of the program. The police ended up finding me and sent me back to the facility. They wouldn’t allow me back into the program and made me go to a psych ward. I just about gave up on the idea that I was ever going to get the help I needed to recover from my ed. So, instead I realized I needed to seek the proper help for my DID. I found a program specialized to treat DID and across the country I went yet again. I would like to say this helped….but I found myself getting kicked out of this program too, due to breaking one of their rules. Still, I didn’t want to give up on myself…not after all I had been through to get help. So, I found another residential facility that dealt with trauma and off to another state I went again. It helped some, but another part got triggered and came out there….and had a suicide attempt. This got us put in another psych ward. And the program wouldn’t let me back in because they said they were not equipped to help. By this time I found another facility to take me…..but at this point my insurance wasn’t willing to help me anymore and kicked me out the same day I arrived. I felt hopeless. I didn’t know what to do at that point. Feeling defeated I came back home to California. I was still struggling with my ed but it was feeling sort of manageable. I felt I had done so much for so long and I wasn’t ready to give up on myself. I decided to go back to a PHP. I started emdr which stands for eye movement desensitization and reprocessing, with my therapist. It’s a type of therapy to address trauma. I did well enough to drop down to iop and eventually completed the program! I continued to see my therapist and my dietitian weekly. I worked with one of my parts who was still struggling with certain ed behaviors. Eventually I was able to get her on the same page with me and she was able to practice the things learned in treatment. The biggest help was my dietitian. Each week she would set goals for me that challenged the ed thoughts that still remained. Each time I met these goals it made me stronger and the ed weaker. There was one goal in particular that was the turning point for me and marked the start of full recovery for me. I had been eating and not engaging in any ed behaviors for a while at this point. But I was still held captive by the ed in regards to what I wanted others to see me as. I would suck my stomach in every time I was in public so no one would see my newly recovered body. My goal was to stop this behavior. This also ended up being my final goal I worked with my dietitian. After that week was over I felt like a new person. It felt freeing to be able to be in my body and let it be the way it was. I had to continue to make a conscious effort to not suck my stomach in for awhile after that week had passed. I combated any ed thoughts by telling myself how proud I was of my new body because it showed all the hard work I did to recover. Whenever I noticed I was body checking, I would say “this is my recovery body and it took a lot of hard work to get here.” Over time this helped me to accept my body as it was. I reached a point where I no longer needed to see my dietitian or my ed therapist. I was able to continue seeing a therapist for help with the DID. It has been 2 years now since then and I can say that I am still fully recovered! What does fully recovered mean to me? Well, for me it means that I no longer engage in any ed behaviors. It means I am no longer afraid of any food. It means I don’t follow any food rules. It means I have freedom and the ed no longer controls any part of my life. I remember when I thought this was an impossible task to achieve. Yet here I am enjoying the freedom that comes with living life without an ed! It still takes work on my part since diet culture is everywhere. I also consider myself to still be in recovery as I always have to use the skills I have learned to combat any diet culture thoughts that pop into mind. I just don’t participate in diet culture talk anymore. Most of my friends know how I feel about it and respect the boundaries I have made in regards to that kind of talk. Sometimes I try to educate people around me who use that language and other times I just stay quiet. I also spread a lot of ed awareness on my Instagram account. I always want people to know that full recovery from an eating disorder is possible and I am living proof.

What helped me the most in treatment was learning about all the lies diet culture had fed me, no pun intended! Also, learning that the size of your body has nothing to do with your health was a big eye opener. Learning all the truths behind the lies made a big impact. Oh, also finding out that BMI is bullshit and why. What helped me stay motivated to keep trying to recover is that the professionals told me it was possible! Also, my dietician and therapist both shared with me that they too once had an eating disorder and they were living proof that recovery is possible! But the most important thing that helped me recover was my own decision to be completely honest with my treatment team and myself about where I was in the recovery process, honest about all behaviors and thoughts, no matter how dark it got.

Sandi’s Story

And perhaps

What made her beautiful

Was not her appearance

Or what she achieved,

But in her love

And in her courage,

And her audacity

To believe:

No matter

The darkness

Around her,

Light ran wild

Within her,

And that was the way

She came alive,

And it showed up

In everything.

Morgan Harper Nichols

 

I’m not quite sure which part of me agreed to do this and yet, here we are. Sitting in a room in Boston, on the opposite side of the world to where I currently call home. That I am here with you is a privilege and is also really scary. I also want to acknowledge my privilege living in a straight sized, able-bodied, white, mostly cis-gender body that functions well and has survived, to this point, without illness or physical disability.

I agreed to step out my comfort zone, out of my bubble, to share this story of recovery so that others might also allow themselves to be seen and heard. So other people can maybe know it’s okay to show themselves and to speak your truth. My biggest hope is that we can all find a path to healing and I hope that in sharing my story it can inspire you somehow to find your own path.

The theme of this talk – ‘hope and inspiration’ – is challenging to talk to because I don’t really find myself inspiring. I live all day everyday with myself and looking from the inside out always looks very different. Its noisy in here behind the scenes and there’s no filter in there so I see everything, not just what I allow others to see. And although I get feedback at times that my story is inspirational, which I deeply value and appreciate, my actions have come from that a pure instinct to survive, to navigate this thing called life, and to find the people and places that enliven my spirit and bring laughter and freedom into each day. This is what keeps me going, these connections and community I have stumbled across.

I’m intentionally not speaking to parts of my story to protect me and to not set up a “your story is worse than mine” or “my story is worse than yours” kind of dynamic because I did this. I compared my situation to what others said and always always came up as being “not sick enough”, not at rock bottom yet, and various other turns of phrase. This kept me stuck for a long time and didn’t serve me well.

So let me tell you a story about a little girl named Sandra Margaret Stone—a joyful, playful, and spirited kid from what I can remember. As she got older she was often labelled as naughty, independent, rebellious, or defiant which, while not inaccurate, are merely facets or parts of her and her need to be seen. Writing her name evokes a real deep sadness in me, as it confronts me with a past where nothing was as it seemed and she didn’t want to be

Sandra’s existence began in 1969, conceived out of wedlock in an era where that mattered, where that was judged and frowned upon harshly. Her parents married late in 1968 which makes her born within the marriage.

Sandra acquired a younger sister when she was almost 4 years old so was raised as the eldest daughter. Her father was (and still is) an alcoholic, and not a very pleasant one. There are not many stories I can think of to tell of good memories that involved him. Not a lot of good memories really at all, although there are some. Somehow the unpleasant memories stick more firmly. She grew up trying to be invisible, to be quiet, to not upset anyone. She wasn’t very good at any of those things even though she did have some very solid role models.

When she was eleven years old she found out she was not the eldest child in her maternal bloodline. She was informed by her father that she had another sibling, older than her and not his child (His attempt to get her “on his side”). Her world was a confusing mix of secrets and realities, of discoveries and unspoken truths that shaped her existence. Until that point she never questioned that she was the first and oldest child in the family. She was excited to find out there was an older child, a girl baby born in the same hospital that Sandra was but who was born with red hair. She was not allowed to ask any more questions nor ever to speak of this other child, ever. This part was harder than finding out because she had a curious mind and really wanted a big sister, a real flesh and blood one, not just an imaginary one that she could never mention. She had a lot of questions that remained unanswered until, in 2021 a DNA test gave us information about how to get in touch with her.

The house she grew up in was volatile at best. There were a lot of secrets in this family. A secret kid that we never, ever talked about, secrets about the fighting and drinking, secrets about all the things that happened behind closed doors, secrets about the things that happened to her, to her mum, secrets about the things she saw and heard, secrets she knew but that were denied and covered up. I guess if no-one talks about it then it isn’t really happening right? If no-one talks about it then its not real? But it was real. Yet so many of these things remained secret or she got told they didn’t happen.

She loved to be outdoors; it was safer outside. Especially anything to do with water or feeling the wind in her hair. She was a good swimmer and although she was competitive, she didn’t care enough to dedicate everything to winning. She was always told she could be an Olympic swimmer if she committed but this wasn’t anything that she overly interested in. She wanted to be celebrated but not be the centre of attention. She was an average runner; she was pretty good at Netball, but she was terrible at soccer. She played cricket on the boys’ team because there was no girls team. She joined the boy scouts and was kicked out of the girl guides. She became one of the boys with her long brown plaits in her hair.

She always believed she wasn’t smart enough. Smart enough for what? She was smart enough but somehow this was not ever part of her awareness. She got by at school, flying under the radar as much as possible. Sometimes in trouble but mostly just being quite unassuming and trying not to stand out too much, other than the fact that she talked a lot in class and was often called “attention seeking”. Imagine her surprise if she could know that we are doing a doctoral degree in psychology – mind blown. I only wish I could let her know we are, eventually, going to be ok.

Being stuck inside a classroom and doing what she was told was not her happy place. In high school she had her own desk and chair in the hallway outside classes, always a great idea to stick the naughty kid in the hallway alone, right? She talked too much and was too disruptive to be allowed to be in the classroom so she found ways to entertain herself outside of the classroom. At home she tried to comply, to be quiet, to not be noticed.

She was a latch-key kid, entrusted to take care of her little sister after school and get them both home safely. She learned how to make after school snacks for them both, most often a cheese sandwich because it was simple.

She grew up in the water. She dreamt of being a mermaid. Whether it was the ocean with her grandma (Mim) or the pool where the laps and training became an escape, the water was always a safer place than land. This is still true today. If I could find a way to live and work in the water I’d be there with bells on.

We lost her grandmother – my Mim – when she was 11. This was a significant event in the life of little Sandra. Mim was a stable thing in her life. She lived near the beach. When we would stay with her she would take us to Gunnamatta Bay. We would walk there. On the way we would stop at the bakery and get fresh yummy bread rolls. Then we would stop by the fruit and vege store and pick up some tomatoes and cheese. Mim would have packed butter and salt in her bag and we’d head to sit under her tree where we would have fresh rolls for lunch. She’d sit under the tree and watch us while we swam and played in the water. I miss her. I miss these times. I miss being a kid and feeling safe in her care. Then at 11 years old I arrived home from school, or at least pretending I’d been at school. I clearly remember walking in the door to the news that Mim had died. Part of me broke that day, crushed into little bits then buried deep. I wasn’t allowed to go to the funeral – apparently, I was too young to understand or something. I’ve done a trip back to the place her ashes were scattered. There is no plaque, just rose bushes. I’ve kept things that were hers and little things she gave me. Sometimes I can still smell her perfume.

She lost a part of herself that day, she lost a friend, she lost a sense of safety. No more Gunnamatta Bay trips, no more hugs from Mim. She kept swimming, she kept running, she found ways to experience fun and laughter and joy outside. Outside what was happening at home. She also found drugs, but more on that later.

Swimming training and being in the pool as often as possible was the most effective escape she had available and lasted until she discovered substances when she was 12. At this stage swimming and sports almost became secondary, although continued until around 14 years of age when it all got too hard to maintain the façade. Substances provided a much quicker and less time-consuming way to escape pressures of having to fit in and succeed. She ducked out of the success fallacy not too long after reaching high school and gave into the rebel, the rulebreaker, the escape. Starting with the more ‘friendly’ or acceptable and readily available substances and progressing from there. The eating disorder was probably there in various shapes and forms from around 11 or 12 years of age, alternating with the substance use disorder. She hated that her body was developing, and that people felt the need to comment on this, to bring attention to the parts that were growing as she hit puberty. She found a way to exist in a world that felt as if she didn’t belong. She found a way to continue, and, in some ways, she found a place to belong.

It’s actually all very messy, as is mostly the case with any kind of recovery. No single episode of care or approach that helped me find recovery. People often seem to have a substance use or an eating disorder recovery story. I don’t have that. It’s tangled and blended and combined with other behaviours and mental health diagnoses which all coexisted. A composite of trial and error with different diagnoses and labels and a multitude of providers – some of whom got it and others who tried to put me a box and make me do it “their way”. I needed to find the path that worked for me not one from a textbook.

It has always been part of her to take the long road, to do things her way, the hard way, the path of most resistance, going against the flow while also trying to belong somewhere. The duality of desperately wanting to fit in, to belong and be part of something and the need to rebel against the norm, to stand out, to be noticed. Falling into the darkness of addiction and an eating disorder not really even knowing that was happening nor how to stop it. Not wanting to stop it because it gave her a sense of community, people to “hang out” with and a reason to leave the house. Conflicted is a word that comes to mind. The natural human need to belong and feel valued and important, while also not wanting to fit into what others said was “normal”. A lot of the time she felt like an outsider, that she didn’t belong in this world. As I say this I can feel the confusion, the fear, the uncertainty. Baffled could be a slogan for her life. Maybe it’s that she didn’t understand the rules of life within the box. She didn’t really have a guide and navigating on her own led us down some interesting paths. Being known as being vague and confused is another way out though, another way to escape, to avoid. It is like a protective cloak. Showing up as not knowing provided space, a way to get others to try and make sense of things, a way to get out of things or get someone else to do it. Or maybe it was a way to feel safer in a world that didn’t make sense, a way to survive when she never really understood why the world is as it is.

The ED part of this existence really hit when I was in my later teens and early 20s. When the expectations from others got too big and heavy to carry. When people wanted me to have goals, to have a career, to have a clear plan for life as an adult. I didn’t have a plan. I didn’t want a plan. Success was finding enough money to survive. Success was surviving another day when I really really didn’t want to. There was always a part of me that wanted to stay to see what was possible. And then the parts of me that were scared, that were unhappy, were lost and confused. They would step in and take over. They’d ask who cares what is possible? Why does it matter anyway? It’s just life. It ends. Let’s get it over with and opt out now.

We didn’t. We stayed. We hung in. The eating disorder ramped up hard every time I was admitted for treatment of the SUD. I couldn’t just be. I didn’t know how to be. Nothing felt safe. Nothing felt real. Nothing felt like it mattered. I didn’t feel like I mattered, despite what people said or how much they said I did matter. I didn’t believe them. I wished I could stop existing.

Somewhere in here I changed my name. I became Sandi James. An attempt at transformation? Maybe. I needed to not have the surname that was my fathers. I needed to lose the name that identified me as his child. I needed to be free of that somehow. It didn’t work at the time, I was still deeply entwined and tangled in trying to get his recognition and approval – neither of which have ever come.

So we carried on.

When you have no money, it’s difficult to connect to other people. When you are using, you don’t really have any friends, but you have connections – plenty of connections but always watching your back, never really able to trust anyone. My survival no longer depended on being good at things but on having enough money for substances first, then a place to sleep, a meal, and someone to be with me in that. Success meant having shelter, food, and enough money to ward off dope-sickness.

My treatment journey did not start by choice, which is the same for a lot of us. I was using a lot of substances, I did have a preference for my substance of choice and, at the same time, any substance would suffice if the one I wanted wasn’t available. Anyhoo…. My stepbrother was part of the 12 step program and decided I needed help. He said he would take me to a meeting in a detox centre – which he did. It sucked and I hated it, obviously…. But then he left me there and I got admitted for 11 days of treatment. What a shitshow that was. Rules, rules, and more rules. Don’t talk to other patients, only allowed to have 12 step reading material… talk about brain washing – which failed obviously.

One vivid memory from that first treatment episode was doing art therapy (something I avoided for years and years after this). The instructions – or prompt – was to draw a place you dreamt of living at. A possible future or something like that. I didn’t quite understand what they wanted. And as usual I got it wrong. I drew a lovely big house with trees and garden and a dog in the yard and all the nice ‘normal’ things that we were meant to want. I also drew a shed. The shed was to hold a never-ending supply of my preferred substance. The staff were less than impressed with my imagined future, with the dream I had for my life. I got removed from the group and “spoken to” in the office. I didn’t and don’t understand why but this was not ok to draw, to imagine, to want for myself. At that time that was my dream house. All the things plus a way to make me feel ok with that life in the suburbs. It took me a very very long time to be honest in therapy again. A really long time.

This experience was pivotal to how I work now. I would explore the image with them. I would not tell them that it is wrong. If I had to do that activity again, my drawing would look really similar although I do now actually have that shed in my backyard. But it’s empty.

I wandered through life the best I could. I experienced trauma, many times. I saw things I wish I didn’t see. I did things I wish I didn’t do. I witnessed people getting hurt, really hurt. Sometimes they didn’t survive. I survived it all. I wondered a lot why I survived. Why I was left behind here in the world. Why others could get off this roller coaster and I was trapped in it.

The eating disorder is so intertwined with the substance use disorder it becomes impossible to distinguish one from the other. Essentially they are the same beast I guess. It was always a trade-off. Get treatment for one, the other would increase. Get treatment for that and we’d go back to the other. The see-saw of ineffective treatment. Self-harm was another pretty consistent theme as well although I think that happened more often when I wasn’t using substances, it was another strategy to try and manage distress. All of these things, all of them, helped me survive waking up each day. An expression of pain and distress, even though I did work very very hard to keep all those parts secret.

I worked from the age of 14 and 9 months. I finished school somehow. I had a couple teachers who saw me, saw the mess I was. They showed care and interest in me. They helped me finish secondary school. I worked in Target. When I left school I got a job as a bank teller. An interesting choice of employment for a human who used illicit substances. I lasted there a year or 2. I moved houses and towns – often. I changed jobs frequently. I worked in pubs. I worked in factories. I did things to get money that were outside the law.

Searching for belonging. Searching for my place. Searching for my people.

I had girlfriends and found a kind of sense of belonging there. I got involved in the Queer community. Was part of the Sydney Mardi Gras for a few years. Until that all fell apart when I had a boyfriend and that was pretty much the end of my belonging in the queer community at that time anyway. Back then there was no space for what they called “fence sitting”. I was told to make up my mind – straight or gay – there wasn’t any space for me within that dichotomy.

I met my wife at a dance party in Melbourne. I was 21 or 22 years old when we met. Our relationship has never been easy. Nothing I have ever done has been via the easy way. She stuck with me. I adore her for that and I am still not sure why she stayed with me. I was one of those people you get warned to stay away from.

Yet I was able to go to university, studied visual arts then became a school teacher. I did this because the world told me I needed to do something so I did. I think I was about 23 when I started my degree. It also provided a nice façade to hide the reality of the eating disorder and substance use that existed behind the façade. Just another secret. I was great at putting on masks and showing up in acceptable ways. I was great at keeping secrets, until I wasn’t anymore. Hospital and detox admissions were frequent and actually informed the work I produced for my graduation exhibition. I made art. I expressed myself in images that, like my life, looked bright and pretty from afar with deep and dark content once you got close up.

I knew I was different somehow; I was always just that little bit different. I never really knew why or what I had done that made me not quite belong. I didn’t understand why I didn’t fit in and I didn’t understand how to do that. Honestly, I still don’t know most of the time, but I care less now than I did back then, in some ways. I did things that helped me feel part of, to feel like I was part of, to feel like I was “normal” – whatever this even means. I had to learn the rules and being quiet was often my go to when I needed to fit. Being a good swimmer gave me a place to belong, even though I usually felt out of place anyway. Substance use gave us all another place of belonging, a community of people all wanting the same thing. The eating disorder was always a big secret, until it wasn’t, but it was one thing that wasn’t about belonging, the eating disorder was about surviving. These days I am more ok with not fitting in, well most of the time I’m ok with being an odd one. Sometimes I notice that pull to be “normal” is strong and at times I have to surrender to this to achieve the things that are important to me. The world is a strange place. These days I recognise that my value lies in who I am, it lies in my differences, in the things that make me unique, creative, and sometimes annoying (or maybe that is oftentimes….). I have come to a place where I embrace those who value the uniqueness and weirdness. I spent enough time trying to be what others considered acceptable, which I mostly failed at. So who better to be than who I am in any given moment. Darkness and light. Hope and despair. Tears and laughter. They all have a place. I have a place. We all have a place.

So many treatment episodes, so many failures. The 12-step total abstinence philosophy was harmful for me. A harm reduction approach worked eventually. I moved away from Sydney to a small mining town in the far west of NSW called Broken Hill when I was offered a 12-month teaching position. Things fell apart in a pretty epic way out there. Stints in psych wards and a load of total chaos and some pretty dangerous behaviours. So many things happened here. Broken Hill was the bottom of the pivot point, where many things shifted in a lot of ways and other things got worse. This was eventually where we found the beginning threads of recovery, although there was still a pretty long way to go.

We got stuck in this town for almost 10 years. It was here I crashed my car – twice, into the same tree. Ending up in hospital both times and eventually having my driver’s licence taken off me for a couple of years and almost ending up with a custodial sentence. I didn’t mention the big car crash I had when I was, like, maybe 22 or 23 or something. My record was not sparkly which is part of why they wanted to lock me up. I avoided it somehow and managed to get a suspended sentence.

Eventually we made it out of there and moved to a slightly larger (still very small though) town on the Murray River. I started doing Triathlons and made some friends in that community—first part of being seen. I completed my registration internship and became a registered Psychologist. Things improved here until it all fell apart again. I was far far away from the ocean and the brown river water didn’t quite meet the same need.

I still felt like an outsider, like I didn’t belong. I don’t think I did belong. I don’t think I belonged anywhere. More secrets, more hiding behind masks, more performing to meet other people’s expectations.

I had to get out. I had to leave, I had to run. I had dreamed of going and living in Thailand ever since I went there for a holiday – or somewhere in South East Asia, but I never ever imagined this would be possible for “someone like me”.  I did live this dream though, I made this fantasy come true. In 2014 I was offered a job in Malaysian Borneo, same same but different to Thailand. Close enough though. I needed to get out somehow. So we packed up our house and I flew out to Malaysia at the end of June. My partner followed a few months later with our dogs and we set up home in a country where no one knew us, where no-one knew me.

This was where I found myself. I made some friends, I learnt to scuba dive and fell in love with being underwater, and I began trail running and competing in the jungles of Borneo. This was the life I wanted. But as usual, things started to fall apart because I was still outside the box. So when I got offered a position in Thailand we took it and relocated to Chiang Mai for 2 years. It was 2017. Can’t say I loved it there, far away from the ocean, but it was also great in many other ways. I’d started my PhD and made plans to go back to Borneo. In 2019 I flew back to Australia to work for a few months while waiting for the new contract in Malaysia. I was due to start work again there in March 2020.

Then COVID hit across the world. Where things fell apart in a massive way when I got stuck in the UK after going there for 10 days to present at a conference. The world closed while I was in Dublin and that was it. Stuck with one suitcase of conference clothes, no job, and no place to live. Stuck for 8 months. The old demons I thought I had dealt with resurfaced in new ways. My mental health crashed and I struggled.

The little girl in me was terrified, again. Feeling unsafe, feeling abandoned, feeling very much alone. She tugged at my leg and my heart. She cried, a lot. We got through and made in back to Malaysia at the end of 2020. I resumed my own therapy with a new therapist, I worked with a dietician, I joined groups and found support. I reached out for help and worked through the shame and embarrassment of needing help – again. I found acceptance and I found compassion and I found people who think like I do. Everything changed, once again, and I made a place for myself.

A new recovery. Another level. Connecting with people across the other side of the world, from a country I had never even visited before. Finding support in places I had never considered before. I found people who wanted to know me, who wanted to help me, and who wanted to encourage me, to help me thrive. This is the sole reason I am here, those people, those connections. I had finally found a place I belong, I think.

I spent so much of my life trying to escape, to forget, to be what others wanted me to be. I discovered that I am never going to be what others want or expect so its better to be just whoever I am at any given time. Sometimes shy, sometimes awkward, often anxious, and always with a hint of humour and silliness. I am finding my tribe, my peeps, the people who want to know me even if I don’t always comply with the “rules”. They value my existence for what and who I am, not what and who they want me to be. They may not always understand, and that’s ok. They don’t try to remove or quiet me, they don’t try to put out my spark, my quirks, my weirdnesses. I have no words to express how much this small mob of equally weird humans mean to me and the life and glimmers they bring into my heart.

We had to relocate again and return to Australia. For how long? I don’t know. For now it is ok. We restarted the process of gaining my Doctoral degree again after COVID saw the end of my last project. My hope for this work is to make a difference in the way people are treated. I have spoken and shared my story, in the hope that others can hear parts of their story and find their own path to freedom. Another life, a different adventure, building hope and creating change.

This is Sandra’s story, intertwined with Sandi’s story. Sandra still lives on in me and shows up here and there. She is safe enough to breathe. She is safe enough to play. She is safe enough so I can take risks – like telling her story.

I’ve learned more about the things that get me through—swims in the ocean, surfing, writing, helping others, motor bike riding, and community and connection. These are the things that keep my cup full, and I know that each of us need to find our own life rafts.

I have learned that recovery isnt a destination that you can reach, or that you may never return from. I don’t believe that anyone doesn’t have the capacity to go back in extreme circumstances. I know that recovery doesn’t look pretty most of the time, but that it is worth persisting through the shit to be able to see the rainbow. I have been lucky enough to find calm, for now.

It’s been a long process of trial and error and I’ve attempted to construct a life with purpose and meaning while also trying earn a living, while also still needing to engage in the behaviours and stuff that helped me feel safer and gave me a sense of having autonomy, even if this was a false sense of security it helped me survive. I’ve had to unlearn, relearn, ignore, pay attention, unlearn and learn again, change direction, hitch a ride with someone else here and there, but at the end I have been able to plant myself firmly in the drivers seat, most of the time. Even if it feels like I often have no idea where I am going or what I am doing, have doubts about my abilities and my sanity, and often get lost or find myself on a road that didn’t lead where I thought it would. The detours and mishaps are all part of the adventure for me.

This a story of fragments of my journey. I can’t share it all because then there would be nothing left for the book I hope to complete one day – if I ever work out how to finish it J

I’m writing stories. I’m collating art works to illustrate the stories. The many many versions of me. The many lives I’ve lived. The many parts of me. The dark parts, The light parts. All the rainbow coloured parts in between. My story will be titled “Not a coffee table book” and maybe it might even get published one day. Working on the PhD and earning a living, all at the same time. I’m learning how to be a public speaker, presenting at conferences and speaking up when there is a need. The journey is far from complete and it is exciting and scary to consider what could be possible. And so, Sandra’s story continues, her legacy interwoven with my being, always present, a figure of the past and a potential future, like the shed at the far end of the yard—always there, and filled with the promise of a future yet to unfold.

Abby’s Story

My name is Abby, I am almost 8 years recovered from an eating disorder. I have been

wanting to share my story for a long time. I attended so many Hope & Inspiration talks

throughout my struggle, and a few years into full recovery I knew I wanted to share my

experience someday. For me, writing the last portion of my story was quite easy. I still clearly

remember the reasons I recovered and how I was able to do it, and how the way I live my life

now is ideal for myself and maintaining my recovery. On the flip side, being asked to dive

back in to the many experiences and factors that led to me developing an eating disorder in

the first place was not so easy to re-live and write about.

 

Myself, and my family I think, had a hard time understanding why this was happening to me

and to us when I was going through it. We were able to figure out the many factors and

experiences that contributed over time throughout treatment, but this is my first time laying it

all out in years. All that being said, I am here now to tell you my story, and give you hope that

it is possible to reach meaningful recovery and live a satisfying life. Not only is it possible, but

it is absolutely worth fighting for.

 

If you were to ask anyone who knew me as a child to describe what I was like, I can

guarantee one of the first words they would use is “sensitive”. I started preschool at an early

of age 3, and in the first parent-teacher conference they described me to my parents as “the

sweetest, and most sensitive little girl”. In addition to, or due to, being so sensitive I was also

a people-pleaser, and I was the type who took any bit of criticism very seriously, and very

much to heart. Anxiety is something that runs in my family, and was definitely noticeable in

me.

 

As a child, I always had an extremely difficult time being in situations that were out of my

comfort zone. I would cry and plead for my mom not to leave me every single day at day-care

drop off. It was strange because the daycare provider was my mom’s longtime friend, my

sister and my cousin were both there, and it was a small group of children at a home just a

few miles from mine. Despite all the comfort factors, my anxiety persisted.

 

As a child I wore my pajamas everywhere, even to the beach. Yes, we have photos of me in

my long-sleeve long-pant thermal teletubby pajamas at the beach. I wore them to preschool

for the first year too, and to day-care of course.

 

Sleepovers? Big no from little Abby. Any movie except the wizard of oz or ET? Probably

not. I did watch the Lion King once as a kid, as when Mufasa died I vividly remember

sobbing to my dad about it because it felt so real to me and upset me so much.

 

Overall, home was my safe place as a kid. I think that’s why I hated going places without my

parents and wanted to be home all the time so badly. I lived with my mom, dad, sister, and

our dog Shammie.

 

Around the age of 6, my cousin Jonathan live\d with us for a while too. As I got older I found

out why; he had trouble with the law, drugs, and living with many family members prior to this

last-resort arrangement. My dad would wake up early to drive him to work each day, and

eventually Jonathan got his own apartment. Shortly after, apparently Jonathan got back into

drugs and ultimately passed away. What I remember most about it is my first grade teacher

pulling me out of class to ask if I was okay, and I just wanted to go back in the classroom to

avoid the topic.

 

 

In second grade, something happened that I didn’t fully understand and I blocked it out

of my mind for a very long time, but now that I am older I know it really affected me and my

confidence. A boy in my class had a crush on me, and all the other boys in the second grade

would taunt me saying very inappropriate things. It wasn’t just bullying, but basically sexual

harassment. It went on for months, my friends knew it was wrong, I knew it was wrong, but I

was so afraid to tell my parents or anyone else because I just knew the things they were saying

about me were “bad words”. The way the school handled it was what really took a toll on me.

When the principal found out she spent the whole day calling me and every boy down to the

office, this lasted for hours, from lunch time until dismissal. Every kid knew what it was about

and it was absolutely humiliating. When I got home that day, I said nothing, but I figured

someone must know. My mom, my dad, my sister, it caused such a disruption in school that

SOMEONE must know. They were all acting completely normal, and my 8 year old self went to

bed that night, for the first time in my life thinking “wow, nobody cares”. The next morning first

thing my principal called me down and handed me a stack of about 30 notes, apology notes

from every boy in my grade.

 

My mom worked late that day, so it was just my sister and I home after school. I sat in the

bathroom reading all the notes crying, so embarrassed, ashamed and feeling like no one

cared about me. I threw them all in the trash and figured that was it.

 

The next day after school, my mom came to me so upset saying “if any boys or anyone says

anything that makes you uncomfortable, you need to tell us.”

 

This situation is one I blocked out for so long I didn’t even remember the full thing until I was

in my 20s. But after it happened, I constantly felt vulnerable and judged for the rest of the

time i spent in that school, and any school in general.

 

Speaking of judged, second grade was also when I started competing in gymnastics. I tried

out at a club gym nearby to assess where I was at, and I made the novice team. Gymnastics

was my first love; I ate, slept, and breathed gymnastics. My parents tried to keep me in

soccer so I could be “well rounded”, but I just wanted to do gymnastics. I was anxious and a

people-pleaser by nature, so it didn’t take much for me to become an overall perfectionist in a

sport that seeks perfection.

 

Around 5th grade I briefly saw a counselor because I had trouble sleeping. And by trouble I

mean I would NOT go to bed. I fully believed sleep was a waste of time. Even at the

elementary/middle school age I wanted to stay up until 11pm studying because I didn’t think

going to bed was worth it.

 

I hit puberty a bit earlier than the other girls around me. This is especially where, looking

back, gymnastics was my downfall, and the real basis of how i I became insecure. I got taller

faster than the other girls my age, and was having to adjust my normal equipment settings on

events like the girls who were a few years older than me had to. At the time, being a gymnast

was looked at, in my eyes, like you ‘had to be tiny’, or at least ‘lean and fit’. Getting my period

in sixth grade felt detrimental to me. I didn’t tell my mom and tried to hide it from everyone

because I thought those body changes would hurt me in my sport, and I hadn’t heard of any

of the other girls on my team getting theirs yet. Early in seventh grade a friend told me she

got her period, and when I said I had gotten mine too she said, “I’m surprised, most gymnasts

don’t get it until much later”, and her saying that confirmed all of my fears.

 

I started feeling depressed in seventh grade, and it progressed worse into eighth grade. I still

don’t know why it started. Of course I just explained to you the bad experiences I had, but

aside from that my life was great. I had the most supportive parents and sister in the world

who were always there for me. I had so many friends in school and at the gym. I was

constantly told I was funny, talented at art and gymnastics, and I was a straight-A student. I

had no idea what was wrong with me that I felt so sad and hopeless.

 

I was feeling so much sadness and anxiety in eighth grade, I had opened up and talked about

feeling worthless to one of my friends, I was self harming without anyone knowing, and was

at the point I wanted to ask for help. Right before I was going to ask for help, someone in my

town in the grade above me took his own life. It was hard for everyone, it was hard for me to

hear about even though I didn’t know him well. When this happened, all of a sudden

everyone was depressed, everyone said they understood him because they felt the same

way, and everyone was self-harming, everyone was dealing with these dark thoughts. I

thought to myself, oh, so all these things i’m feeling and doing are totally normal. Why would I

think otherwise because from what I was hearing, everyone felt this way, right?

 

The Summer going into high school is when my depression and anxiety began to intensify,

and the first symptoms of my eating disorder emerged. After believing puberty had made me

too big, I decided I wanted to “be healthier” and “get more toned”. Hyperfixating on diet and

exercise spiraled out of control the first few months of my freshman year of high school. My

eating disorder behaviors became more severe. I was drenched in feelings of shame, guilt,

sadness, and self-hate. I would feel endless amounts of guilt if I did not obey my eating

disorder. I truly believed I did not deserve to take up space and that the world would be better

off without me in it. These dark thoughts engulfed my brain, my eating disorder wanted me to

be its definition of “perfect” and would not accept anything less than that. I didn’t know this at

the time, but no matter how much weight I lost, it would never be enough to satisfy my eating

disorder.

 

November of freshman year began my first experience in treatment, and the beginning of my

recovery journey. I had been seeing a few providers for self-harm and depression related

issues, and they picked up on my ED behaviors. I went to see an ED specialist and after a

week she had my mom call to enroll me in an IOP, my first program. My mom made the

phone call outside the doctors office, and began to cry as she said the word “anorexia”. I

nearly rolled my eyes as I didn’t think I had a problem with food at the time. But as soon as I

started treatment, meal plans, exercise restrictions, and being monitored around the clock by

my family to prevent me from using ED behaviors or self harm, I quickly realized “okay,

maybe this is a problem”.

 

The first round of IOP led to partial, then back to IOP, then partial, then residential, then

inpatient, then partial, IOP…. I won’t go through every individual time, but you get the picture.

I spent my 4 years of high school in and out of different programs. The ones that helped the

most were family-based treatments, these helped my family members to understand not only

what I was going through, but it gave them the knowledge of how to feed and support me.

Having loved ones around, especially my parents and sister, monitoring me almost 24/7 was

the last thing my eating disorder wanted, but it was exactly what I needed.

 

Finding a great team of doctors, individual therapist, and endless CBT and DBT courses were

key in my healing. To this day I think CBT and DBT were extremely valuable in helping me cope

with daily life and communicate.

 

Outside of treatment, being around friends and family with healthy body-images and eating

habits was extremely helpful. For example, although vacations and non-routine days caused

stress, being with my family and joining them in 3 meals, and scattered snacks without even

thinking of it, just doing it, helped me realize it’s possible to eat normally without pre-planning

and over analyzing. Even seeing friends who may occasionally point out parts of their bodies

they disliked (as most teenagers do) helped in the long run, because it made me realize you

could be unhappy with parts of yourself, but not let those thoughts run your life. I tried to never

focus on self-love, it seemed irrational and out of reach for me. Instead, i I wanted to be like

other people who i I saw as “normal”. I never had a “lightbulb” moment that changed everything

for me. Close to the end of senior year, I was quite frankly sick of being sick. I was sick of not

being able to go to parties or on day-trips with my friends, leaving sleep overs early so I could

have a snack with my mom, and not being able to live my life because I had already missed so

much.

 

The fourth of July in 2016, shortly after I had graduated high school, is the day I consider my

full recovery started. I was at my Nana’s cape house with her, my mom and cousin. We went to

a restaurant I had always really liked in the past for a late lunch. For some reason, this day was

when I decided to dive in head first and give things a try. In treatment so many times if I was

struggling to eat a meal the counselors would say “why don’t you just try and see what

happens?”. I had used to think “I know what will happen, everything bad my eating disorder

tells me will happen is going to happen beyond worse than I could imagine. It will feel like the

world is ending.” This particular day at the restaurant, I decided to just try. I shared an appetizer

with my family, and ate a meal I really loved, but was a fear-food for what seemed like ages. As

we were waiting for the bill I sat there and nothing happened. NOTHING happened. I got to

enjoy one of my favorite foods again without thinking of weight, calories, or losing control. I

enjoyed the taste and getting to share food with loved ones again. I didn’t feel the need to

engage in behaviors, and I didn’t lose control. Every fear I had let take over my life for 4 years

did not come true. For the first time in years, I felt free.

 

Recovery happened for me when I took all the lessons I had learned and re-formed them in a

way that made sense to me. I don’t think recovery is necessarily “learning to love yourself” or

re-becoming the person you were before you got sick, but it is re-creating a brand new you who

you really like. I know I matter, I know I am a good person, and I deserve to be happy. I have

always been an artist, but throughout recovery I have begun to really pursue my love of

painting, even doing some professional work. I enjoy hiking and being in the peace of nature. I

have found leisurely hikes to be very calming for me, they help me stay active without risking

getting into an unhealthy exercise regimen, because I am more focused on taking in the

beautiful surroundings. I love taking weekend trips with friends and trying new things. I am able

to live independently in an apartment with roommates, cooking for myself and planning my own

meals (or ordering take out if I’ve had an exhausting day). I have learned to accept that I am a

sensitive person who requires a lot of down-time to avoid getting overwhelmed by the

unavoidable chaos of the world. I have learned to love how empathetic and compassionate i

am, seeing it as a strength and not a weakness.

 

Just because I have transformed into a person I am proud of and built a life I am grateful for,

does not mean my life is perfect. The hardest part of living in full recovery is finding healthy

ways to cope with the difficult, uncontrollable, and inevitable hardships that come with growing

up and living life. The use of mantras have been extremely helpful for me, I have a poster with

all of my favorite ones. There have been times where I will sit there and read them out loud

over and over. Or I will choose whatever ones from the list work for me in the moment, and say

them continuously. Learning to open up to family and friends and talk about my feelings has

made a world of difference instead of holding things in. Acceptance is a skill that takes work to

master, but learning to accept things as they are and know when I cannot change them, even if

I don’t like them, has been key in navigating my young adult life. Sitting with uncomfortable

emotions and dealing with uncontrollable circumstances used to make me spiral into my eating

disorder thoughts, but now I accept that it is a part of life, and I have a lot of things that are

important to me and make life worth living, no matter how bad the bads get. Practicing all of

these skills over and over has made them the automatic response for me. I have found strength

in myself and courage to take on anything life throws at me. This did not happen overnight, but

with commitment, patience, and the drive to be happy, it is possible for you too.

Brianna’s Story

My name is Brianna Elizabeth meaning woman of strength by grace. My dad named me that because I was born exactly two months early. I wasn’t expected to survive, and my name was chosen while my dad was singing the James Taylor classic, “You’ve got a Friend” to me in the NICU in Quincy, Massachusetts. I love my name, and it’s a lot to live up to.

I was diagnosed with cerebral palsy when I was a year old. Cerebral palsy is caused by a lack of oxygen to the brain and is a direct result of my struggle to survive my birth.

I am the oldest child in my family and have a sister and a brother. It was really hard to watch my siblings participate in sports growing up, because I couldn’t do them. I often feel trapped in my body. It’s hard to explain what it feels like to have a body that simply won’t do what I want it to. I felt really alone when I went to my sibling’s sports games and would often imagine what it would be like to play with them.

When I was eight years old, I had surgery for my cerebral palsy that would allow me to do the things I had been missing out on. I was really scared at the prospect of having surgery, but my eight-year-old brain thought it would solve all of my problems. Having surgery was a really hard and traumatic experience for me. I developed what I now know is PTSD and intense anxiety. I had physical therapy at home for more than a year. I felt so much pressure to walk perfectly. The adults around me acted like I was an able-bodied person in training. I tried so hard every day. I thought that maybe if I tried hard enough, my disability would go away. It seemed like my worth as a person was measured by my ability to walk. I couldn’t let all of the people around me down. I had to hide my disability. I worked so hard in physical therapy and pushed down all my anxiety and fear and eventually left my mobility aids behind. I never felt good enough and often experienced panic attacks about my cerebral palsy returning.

It was around this time that I transferred schools. I had previously been in a self-contained special education class because of my disability. None of the teachers in my previous school taught me much of anything, because they assumed I couldn’t learn. I’m so grateful my mother managed to pull me out of my first school, and going to a new school in second grade and being behind academically was really hard. There were some great parts to that year though. I made my first real best friend, and I had a great teacher who helped me catch up. I also realized how much I love singing and I sang in a school play that year.

I had pretty much forgotten about my disability until fifth grade. I was singing in a rehearsal for the musical “Annie Get Your Gun,” when all of a sudden, the muscles in my legs became really rigid and I felt like if I moved them, I would fall. That’s a common experience for people with cerebral palsy. My brain doesn’t communicate with my legs very well. This often causes random and involuntary movements. I didn’t know this when I was eight, and I lived in constant fear of my body tensing up and me not being able to control it. I was struck with the realization that my cerebral palsy didn’t really go away and that the surgery didn’t work quite like I had hoped. I tried so hard to hide my struggle, which led to difficulties with appetite, due to my intense anxiety.

I went into sixth grade and was bullied by my peers for the first time. It was also the first time I wasn’t the smallest girl in my class. I felt a deep sense of failure, because I was no longer the smallest. People were mean to me, and I no longer had being the thinnest to fall back on. I was coping with everything okay until one day, a popular football player ran into me on the playground knocking me down and causing a concussion. Everyone said it was an accident, but it wasn’t. I could tell by the way he looked at me, just before I fell. My mom picked me up from school and after a visit to the doctor, took me to get ice cream. I struggled to eat it and decided I wanted to be the smallest girl in school again, because that is all I felt I had.

My anxious lack of appetite didn’t actually become an eating disorder until ninth grade when we started learning about calories in health class. I realized that I couldn’t control my cerebral palsy, but I could control my body size. This realization comforted me greatly. For the first time, I felt like my body actually belonged to me instead of being something that’s sole purpose was to cause me anxiety and fear. I finally found something that made me happy that I could be good at. My eating disorder was something I kept secret for many years. The people closest to me in my life didn’t notice, because I had so many excuses to explain away my behaviors.

People continued to bully me, and I felt more and more alone. I was told by many adults in my life that people just didn’t understand disability and that my peers reactions to my disabled body were “developmentally appropriate” and that I needed to show the people that bullied me relentlessly compassion. It is never okay to treat someone with a disability like a second-class citizen. I think so many people forget that people with disabilities have souls just like able bodied people. We have dreams and goals and want to have friends just like anyone else. I wish the kids at school remembered that when nobody let me sit with them at lunch.

Since I was told I couldn’t outwardly display my anger towards my classmates, that anger fueled my eating disorder instead. I thought that if I was thin enough people wouldn’t notice that I walked differently or maybe it just wouldn’t matter. If I could be pretty enough, nice enough, thin enough then maybe people would overlook my disability, so I became those things. In seventh grade, I started wearing makeup and spaghetti strap tank tops. Hair straighteners came out during that time and my previously frizzy hair became sleek. I also started making really good grades. Some people were still mean to me, but they respected my academic achievements and I felt good about myself.

I went to a new high school in tenth grade and that’s where I feel like I finally broke. The boys in my class really didn’t like my disability and frequently pushed me into lockers. I felt constantly unsafe, because I was. The psychologist my mom took me to recommended that I keep attending school, because she said socialization was good for kids with emotional problems. I know she didn’t realize the extent of the bullying that I faced and neither did my mom. I wish adults realized just how emotionally traumatizing and unsafe bullying can be. Socializing is amazing for people with mental health challenges, but this wasn’t socialization, it was a survivor game.

My younger brother did realize the extent of my struggles. One day a boy shoved my head into a locker. This was normal for me, so I just tried not to cry and continued walking to class. It turns out that my brother was just around the corner and saw the whole thing. So, as a freshman he started and won a fight with a senior. He got suspended from school which prompted a conversation with my parents. My brother and I didn’t attend school for the rest of the year.

I went to college the next year. I was really excited about it, because I looked at it as a new beginning. In many ways it was. The relentless bullying stopped, and I finally was able to live on my own. I didn’t mind my disability as much because it was no longer the center of my world. I made so many new friends and had a lot of fun. I even met my best friend Stephanie on the bus that transported us from the dorms to class. I couldn’t find a seat which made me anxious. She invited me to sit with her and then decided to have the whole bus scream sing the Shania Twain song “Man I feel like a Woman” to make me feel better. I had a lot of fun times like that with her throughout my time in school. Unfortunately, my eating disorder made my college experience really difficult though because it turns out, that eating disorders cannot just be switched off when a sufferer’s quality of life improves. I struggled most intensely during a time before eating disorder treatment of any kind was covered by insurance. So getting any sort of help on a college student budget wasn’t possible. My parents have never been helpful in my recovery at all for their own reasons which I have very limited understanding of.

Even though aspects of my college experience were hard especially with not being able to access support for recovery, I started doing a lot of research on eating disorders which I’m really proud of. In my research, I learned several really important things. I learned that eating disorders are genetic and people that struggle with anxiety like me are more likely to have them. I also did a survey on Facebook and learned that fifty percent of people with cerebral palsy struggle with food. Most importantly, I learned that people of any weight can struggle with any eating disorder. My best friend Stephanie struggled intensely. She lived in a larger body, so I started doing research on what is now known as “atypical” anorexia and learned that restrictive eating disorders occur in people of all sizes. This is common knowledge in the eating disorder community today but was really groundbreaking in 2005. Stephanie and I started a support group for eating disorders at school and made the first recovery community that I participated in. My friendship with her was one of the best things that ever happened to me and helped me so much. I loved my college experience, but I was really excited to graduate and work so that I could afford help for my eating disorder.

I remember so vividly the first time I walked into therapy. I met this therapist through the one singular recovery group my parents let me attend in high school. I remembered her, and after writing an essay on recovery to receive a sliding scale rate, I made an appointment. Working with her was different than any therapy that I had in the past, because we worked directly on my eating disorder. The experience was helpful, because for the first time, I felt like someone actually understood me. I continued to struggle though because outpatient therapy wasn’t enough for me, and it was all that I had access to. My therapist was not an eating disorder researcher by any means, and constantly told me that at least I wasn’t as sick as the other women in the support group I attended. I tried explaining to her that eating disorder severity isn’t based on weight, but she didn’t want to hear me. It was really hard at that time because my dietitian sided with my therapist because they were best friends. They refused to look at the research I had gathered and the surveys I made during college about body diversity and eating disorder prevalence. So, I felt stuck because like many clinicians at the time, they didn’t think it was possible that a twenty-two-year-old could know more than they did about anything, much less the subject they devoted their careers to. I really wanted to find a new team at that point. There weren’t other providers available though. So, I made the best out of the situation until the miracle happened.

The miracle happened slowly, but I had this feeling that something beautiful was going to happen from the start. My mom had just completed her master’s degree in organizational leadership. She’s a nurse and on a Tuesday afternoon in late September she received a message on LinkedIn about a nursing job in Denver, Colorado. She didn’t like her current job, so she called the recruiter. She wasn’t truly considering the job until one day she did.

I still can’t believe that I landed in snowy Denver with my parents in March of 2015. It was beautiful and peaceful, and I fell in love with the city instantly. The city also offered some of the best eating disorder treatment in the country.

My therapist there was amazing. She is so kind and insightful and knew just as much about eating disorders as I did. She helped me with many things, and she was the first therapist that I processed my struggles with cerebral palsy with. She really helped me come to terms with and accept being disabled in a way that I never had before.

The city of Denver is breathtaking and very accepting of all people. For the first time in my life, I could start a conversation with a stranger without immediately being questioned about my disability. I started going to yoga every day and met really great friends. I learned so much and accepted myself in ways I never imagined I could. While living in Denver, I started accepting my sexuality a little bit at a time. I’ve always known I am a lesbian. I never told anyone though, because as the younger generation says, I didn’t want to be “too extra.” I thought that with my disability and eating disorder that being gay would be too much especially for my very conservative parents. I didn’t tell my family I was gay at that point, but accepting myself was a really big step for me.

Everything was going really great for me with friends and recovery for a few years. One night, I had a very vivid dream that I was getting married to a woman in the mountains in Estes Park, and that my favorite yoga teacher, who is also an urban priestess, was marrying us. The wedding was attended by all my friends who loved and accepted me. I woke up and realized I couldn’t be a closeted queer person anymore. I felt really stuck and I relapsed into my eating disorder. My friends all wanted to support me and asked me what was wrong, but the thought of telling anyone about my sexuality in any detail was terrifying. I stayed really stuck until one day one of my friends changed that. I’m going to read a post I wrote in the recovery community about that experience.

My beautiful friend Maddy FaceTimed me on a sunny Thursday afternoon in late April. I smiled when her picture popped up on to my screen, and quickly clicked accept. I have always admired her for her authenticity and the way that she accepts herself and others and joyfully said “Hello!” But she was crying. “What’s wrong?” I said. “I have to eat something, before I can leave the hospital. Can you eat with me?”

I quickly grabbed a snack and as I contemplated eating it, I realized I couldn’t eat either. Maddy and I both struggled with eating disorders. I had been doing well for quite some time. I could blame my recent issues with eating on a relapse, but that just wasn’t what was really going on. Maddy urged me to eat first…but I couldn’t. I needed to say something, but doing so would force me to acknowledge it myself. But then again, we were both stuck not eating. I wasn’t sure I could do it. I also knew we both couldn’t be stuck with eating disorders forever.

My mind flashed back to a trip I took to South Carolina with my mom and sister. We got stuck in an actual hurricane on the beach one afternoon. I told my mom I couldn’t walk back to the condo because of my disability. She replied, “Sometimes, it doesn’t matter whether you think you can or you think you can’t you just have to.”

This was definitely like the hurricane but somehow worse. I did get out of the hurricane eventually, but unlike the hurricane, talking about this would alter my life permanently. It wouldn’t be temporary. I reminded myself that being stuck with an eating disorder is hard too. And we were both stuck not eating. That by any definition isn’t sustainable.

“I’m a lesbian,” I said to Maddy and started crying before I finished. “Good, welcome to my team” she said enthusiastically. She has always been a very out person, and although she’s struggled with people not accepting her, she’s never let it stop her from being true to herself.

I noticed that we both started eating. I was telling her how proud I am of her for always being so open and taking the big risks like being the only person that was openly in the LGBTQIA community in her high school. I told her that if she was that brave at fifteen, she could be brave now. We finished eating with tear-stained faces.

We are both recoverED today and open about our sexuality most of the time. Maddy continues to inspire me. We don’t have to go through anything alone. Everyone has resources that can be used to help other people. I don’t think we are supposed to have all the resources, because if we did, we wouldn’t need each other. I’m really glad I need Maddy and that we were both able to free ourselves.

Everyone has at least two seconds of courage. That’s really all that it takes. Do something hard with a friend. Be honest about something. Finish the food. Do a thing that terrifies you. You aren’t alone.

My experience coming out to Maddy helped me tell other friends that I am a lesbian. I love that the universe has a way of helping us out of situations, when we feel really stuck.

Things got better really quickly after I started being more open about my sexuality and engaging in recovery again with my treatment team. My therapist went on maternity leave in December of 2018 after struggling with infertility for a long time. When she had her baby, I felt really inspired to give recovery a real try. I met an amazing dietitian that really helped me and my first eating disorder specialist medical doctor. My Dr had a really big impact on my life in many ways. We had a lot of conversations about recovery and why I kept getting stuck. She asked me about my struggle with cerebral palsy in the most compassionate way I’ve ever experienced. I told her that I really disliked one of the treatments for my cerebral palsy, because even though this treatment allowed me to walk independently, it negatively impacts my brain function, making the writing and research that I passionately love impossible. She helped me come up with a plan to stop this treatment, and then helped me pick out a walker to use instead. She was the first person that asked me what I wanted to do as far as medical treatment and didn’t automatically assume that walking without a mobility aid was better than using one. She helped me realize that I care deeply about research and finding effective treatment for eating disorders. Writing and doing research for me means using a mobility aid. For the first time, I felt like I had a say in my own life.

In the summer of 2019, Stephanie died of her eating disorder. I thought a lot about whether I was going to share this part of my story, but ultimately decided that it is important. Stephanie died of malnutrition. She lived in a larger body and because of her body size, clinicians refused to treat her for anorexia, and because of that, she’s not here. We shared the same terrible therapist in college. He once told her that she was faking her eating disorder and wasting his time. She never got over that comment. Stephanie struggled so much, and I’m certain that having that therapist’s voice in her head made things so much worse. I don’t have a best friend anymore because of weight stigma. Eating disorders can and do occur at any body size. I miss Stephanie so much, and I hope to honor her by continuing to advocate for better treatment for eating disorders.

Things were going well for me until March of 2020, when they stopped going well for everyone. Working in a grocery store during the pandemic was incredibly traumatic. I had to stick with it though because people need food to survive, and I needed money. During that time, the recovery community came together in a beautiful way and offered many meal support Instagram lives. I met so many wonderful people who saved my life during that time. One of the people who impacted me the most was Monika, the executive director of MEDA. She helped me so much. She’s the only human I’ve ever encountered who has significantly helped me with the PTSD symptoms I struggle with. Through her, I started going to the MEDA recovery groups. MEDA is an amazing community that has given me so much. I remember the e-mail I sent Monika asking to be a moderator for the new recovery community she was starting. I was certain she would say no. I thought I needed a lot more experience than I currently have to be a moderator. I’m so happy that she told me I could do it. I am so proud of all of the moderators and the whole community.

I’ve done really well in recovery since I decided to give it my best effort. I’ve learned so much about myself and the world, through the process. Overcoming a life-threatening eating disorder taught me so much. I’ve had to unpack a lot of things to survive. I’m going to share a summary of what I’ve learned now.

Ableism sucks and is a powerful and extremely destructive force in our world, just like diet culture. Our world will need to continue to radically change, while learning to value the contributions disabled people make to society to overcome it. It is never okay to make fun of someone with a disability or consider it “developmentally appropriate” for a child to make fun of another classmate. Disabled people do have souls and need a friend to sit with at lunch just like everyone else. Asking a child or an adult to handle their bullies with grace, and to accept that they might not have friends, because people “don’t understand” is inappropriate and traumatic. If you are part of the LGBTQIA community, any discrimination, you face is wrong. Nobody is ever “too extra.” People with disabilities are not able-bodied people in training. The amount of pushback I’ve received from people in my life regarding my decision to stop a treatment for my cerebral palsy, in order to persevere my brain function, is wild to me. Disabled people should not be encouraged by society to pursue walking independently or do anything that they struggle with, without first evaluating the cost of that decision. Walking is not everything. I’m still valuable even if I can’t do it well. I’m not your inspiration. My disability is the consequence of my traumatic birth that I almost didn’t survive. My sole purpose on this planet, is not to miraculously overcome my disability and help you feel better about your own less than ideal circumstances. You can do that yourself. I think some able-bodied people truly believe that disability causes a person to be unhappy. I know deep in my soul that this is false. Happiness comes from being able to live a life that brings you joy. Happiness certainly isn’t defined in ableism. For anyone in this community struggling with an eating disorder, disability or anything else, there is always hope and recovery is possible. It is also possible to live a beautiful life in the midst of struggle. Thank you so much to everyone in this community for allowing me to share my story. I love this community deeply. Thank you for everything you have blessed me with. Your story matters. Keep trying in recovery and in life and know that especially when it is scary, it is so life-giving and necessary to close one chapter and begin again. The most beautiful things are yet to come.

Bailey’s Story

It was 3 am and I was hunched over on the toilet in excruciating pain after taking a fist full of laxatives on an empty stomach. Meanwhile I am desperately stalking my ex on social media, scrolling through pictures of him with his new girlfriend on their Australian vacation even though we only broke up like two months ago. As I stand up and flush, and deal with the aftermath of my behavior, I am thinking to myself “This is not how I imagined 25 would be”.

That’s my worst Eating Disorder day. If you have read the Eight Keys by Carolyn Costin and did the assignments…then you have probably thought about the worst day of your ED too. Truth is, every bad day in a relapse is worse than the next.

It took me a long time to realize that, and on that worst day or rather, worst DAYS, I could truly not imagine a life without my ED or that a bad day in recovery wouldn’t lead me back down the rabbit hole. My eating disorder always screamed at me with a vengeance after break ups or more accurately, after any perceived rejection. This is a pattern that would repeat over and over until about 4 years ago.

The first time I had a negative thought about my body I was 6 years old. It was a dance recital and my best friend, Cydney, and I were dressed as Peter Pan for a performance of I Don’t Wanna Grow Up. An irony I think about a lot now that I have fully realized my ED also functioned to keep me from fulling growing up and taking on adult life. We were posing for pictures backstage and I overheard my mom say to her mom, “Cyd is such a peanut, just so tiny! And with that blond hair and blue eyes, you’re going to be in trouble when she’s in high school!”. I knew then that in comparison, I was bigger and therefore less desirable. Adults back then would describe me as “solid”. I learned to hate that word, in addition to other words like “flattering”. My pediatrician would bring out that horrific pink growth chart at every appointment and lecture my mom and I about the importance of diet and exercise.

Something important that doesn’t really fit anywhere else in my story is understanding a little about my family constellation. I am from a large extended Irish Catholic family. I like to say that my mother’s side of the family is the fairy Irish, they are all small, dainty and unreasonably attractive. My father’s side of the family is the potato farming Irish. You know, the brawny, athletic, built to survive a famine Irish. I favored my father’s side and my younger brother always favored my mom’s. So while I was desperate to be smaller, he was always on a mission to be bigger and tougher. I like to say that we were raised in the same house but by completely different parents. My parents truly hated each other for the majority of my childhood and did not agree on how to raise us so effectively, I was raised by my mother and my brother was raised by my father. There was a cycle of physical, emotional and verbal abuse in my family that made me see my father and my brother as the Enemy. As a result, my mother and I became extremely emmeshed. Similarly, my father and my brother became emmeshed as well. A pattern we still have not fully grown out of.

My brother started wrestling in 1st grade. I don’t know how much you all know about wrestling as a sport, but it is entirely centered around weight. My father kept a scale in the kitchen. I watched my brother weigh himself ritualistically every day. And I secretly started to do the same. I watched him restrict, purge and overexercise in an effort to control his weight which theoretically made him a better wrestler, all before he was even in middle school. I watched and took notes. In some ways, I rejected everything he and my father did. I actively hated sports and viewed sports and exercise as punishment for gaining or losing weight. I learned what foods were “safe” and which ones should be avoided if you were trying to maintain, lose or gain weight. Family dinner conversations often revolved around weight and people in larger bodies as a punch line in jokes. I feared becoming the subject of these conversations and I remember being terrified that when I wasn’t in the room people were talking about me the way my family talked about others.

Despite being entrenched in diet culture, I continued performing, I found a love for acting because there was relief in shedding my own skin and becoming someone else for a brief time. In 6th grade, when puberty hit me, and everyone else like a mac truck, my body image plummeted. I had my biggest role as the Queen of Hearts in a community production of Alice in Wonderland. After the show, my friends presented me with a bouquet of roses…just the stems (off with their heads!) and we posed for pictures. I saw the photos after and was truly disgusted by my body. I went on my first diet the next day using a lot of the same behaviors that my brother was praised for as an athlete, thus starting a long battle with my weight and self-hatred. It was my last time on stage. I wished to be invisible and developed a true fear of being seen. However, because I was “solid” and unhealthy behaviors were so normalized in my family…no one noticed.

When I was 16, my high school boyfriend dumped me after a year of dating and then came out as gay in front of the entire school during an anti-bullying assembly, which ironically led to me getting bullied for “turning him”. In one fell swoop I lost my first boyfriend, all my friends who chose his side, and a month later, my aunt died. It was a perfect storm of loss and emotional turmoil that had me in a dark hole of depression, worthlessness and desperation for affection and acceptance. I upped the ante on my dieting and lost weight rapidly. The bullying stopped and other boys started to pay more attention to me the thinner I got. I learned, as so many women do, that my desirability was directly related to my weight and the gaze of men. I spiraled into depression. The day before my 17th birthday I was suicidal. I spent the night in the ER and after talking with the social worker, and lying my ass off about the severity of my depression, I was sent home. I started medication and did okay for a while. For my senior year, I got to go to a magnet art school and for a year, I forgot to starve myself. I gained a little weight and while I still cared, and hated myself for it, I had other things to focus on that seemed to matter more. I like to call this time in my life an accidental/spontaneous recovery.

I’ll fast forward a bit, in college I experienced binging for the first time. I hated myself so I comforted myself with food. Then I hated myself for eating and comforted myself with more food. The more I comforted myself, the more I hated myself and the more I hated myself the more I sought comfort. I still regret my undergrad experience. I isolated and avoided everything and everyone. I didn’t date, I didn’t go to parties, if I didn’t like the way I looked in the morning I didn’t go to class. By my senior year I was my highest weight ever and skating by academically by the skin of my teeth. Then a miracle happened. I was approved for jaw surgery. Its probably important to mention that while all of this was happening, I also had a facial deformity. My chin was growing sideways. My mom and my friends assured me that it wasn’t noticeable unless you were looking for it but to me, it was the most glaring flaw that practically announced itself when I entered the room. So when a doctor agreed to surgically screw it all into the right place, I thought it was the CURE. If my face was fixed then my life would be fixed, I would finally be confident and deserving of love and attention.

I am sure you are all shocked to hear that it didn’t work. But for the sake of the story, lets keep going chronologically.

After the surgery, my jaw was wired shut for two weeks and I was on a liquid diet for 6 weeks. Now, I am sure some of you in the audience are thinking. “What a lucky bitch”. I can assure you that feeding myself with a syringe is not the miracle answer you are looking for. It was messy, painful, and honestly so grotesque to look at. And because I couldn’t feel my mouth for several weeks, I did have to look. I had to eat in front of a make up mirror to make sure that I didn’t miss my mouth. Not to mention, I couldn’t brush my teeth adequately for weeks either. So gross. But I did lose weight, and fast. Dangerously fast. And again, no one cared because everyone saw it as a wonderful side effect of having an excruciating surgery, the silver lining of having adult braces and having to use a baby toothbrush for months. But that evil little voice crept back into my head. I still hated myself, but since a new face didn’t “fix” me, I started believing that being “thin” would “fix” me. So pushed the envelope on how much weight I could lose and blame it on not being able to open my mouth all the way.

9 months post op (still wearing adult braces by the way) my cousin introduced me to her friend from school. Jarad. He was awkward but funny and he flirted with me. We started dating a couple weeks later. And for a while it was really good. I started working an ED residential in the Boston area as a mental health counselor. It felt so good to help people I related to. I felt really good about my life, I had a job and a boyfriend I loved. We both gained relationship weight, but it didn’t matter because we loved each other. Except, he didn’t. He started telling me that I needed to diet, I felt so much shame because I knew he was ashamed of being seen with me. He was ashamed that I wasn’t as athletic as his roommate’s girlfriend, and ashamed that my career as a mental health counselor was not making as much money as he wanted me to make. He told me I didn’t deserve a lot of things. We started monitoring calories and going to the gym more. Dieting was something we did together and it got me his approval. Even if I was starting to cry about eating “too much” again. It was slow and steady but my body did start changing again.

A year and a half later he dumped me, and I once again felt suicidal. In the ER that night, I again downplayed my depression but this time, when asked about my eating habits I couldn’t lie. Maybe in some way, I was proud of how little I was eating and thought the doctor would be impressed? I am still not really sure why I told the truth. But when I saw my therapist the next day, she confronted me about it and I was finally diagnosed with an eating disorder.

Now that it had a name, Anorexia, it seemed more real, my ED felt validated and almost empowered? At the same time, I thought I could still stop any time I wanted. I would just get my revenge, break up body, make my ex jealous and then move on with my life. But then he started dating someone else. So I restricted more and started purging. But it never felt like enough. I went to PHP for a minute but ended up leaving AMA because they told me to go to residential. I kept digging myself a deeper and deeper ED hole. At one point, I flew all the way out to CO for residential because if I was 2000 miles away from home it would be harder for me to leave right? I lasted 8 hours.

I was in complete denial. I was a scientific anomaly. I was going to be the first human to live without food. I quit my job because the residents started to notice. No one can sniff out an ED like someone with an ED. And I started a new job in a similar position but not working with the ED population, met my next boyfriend, Cole, who was kind and supportive. But medically, I started deteriorating. My doctor wanted me to wear a heart monitor. This was the last straw for my therapist, she gave me an ultimatum. Go to residential for at least a month or stop seeing her. I love my therapist. I have been seeing her for almost 8 years now and she is the perfect balance of empathy and therapeutic roasting. So, I went to residential. I was there for Christmas and New Years. I finished and went to PHP. I kept seeing my therapist and my dietician, but I didn’t fully commit to recovery. I was half-assing it. I didn’t follow my meal plan and I still weighed myself everyday, but I did the bare minimum to stay out of treatment. Cole and I broke up after 9 months and I decided it was because I had “let myself go” in my half-assed recovery. So, I committed to relapse. I got to my lowest weight and was given another ultimatum. I went back to residential. The night before my intake I took a lot of laxatives. In my first 24 hours, I ate a full meal and couldn’t handle the emotional overload that came with eating 100%. I told a counselor I would kill myself if I had to eat another meal. They sectioned me, but it was horrible, the cops came to the residential and cuffed me and threw me in the back of a paddy wagon. In the ER, people stared at the skeletal girl in handcuffs and whispered. I somehow convinced the doctor in the ER to send me back to Residential and when I got there I called my dad to pick me up. I called my dietician who pulled some strings and got me into a different PHP.

For three months I half-assed my way through PHP and did the bare minimum. I watched several others leave and they seemed to have found a full recovery. On my last day, I sobbed in the arms of a milieu counselor and admitted that I had been faking it. But I went back to work and kept half-assing it because that was the best I could do. I ended up quitting that job because I watched a teenager purge multiple times a day while the clinical team did nothing, and it was so painful to watch a child fall through the cracks in the system the same way felt like I had at the same age. I felt like I could see her future.

On New Year’s Eve 2019 my best friend got engaged. I was happy for her, but it was the loneliest I had ever felt. I redownloaded the dating apps and started swiping, when I found Peter. A week later we were on a date. Little did he know that I was fresh out of eating disorder treatment, jobless, and truly at rock bottom. He invited me out for drinks and then surprised me by making it dinner reservations instead. My ED was SCREAMING we had only planned on drinks how could I manage to eat in front of him?! But he was so kind and funny, so I told my ED to shut up. I started a new job a week later and fell in love with it. I really wanted things to work out, I wanted to finish grad school, I wanted a successful relationship and I wanted to stay at a job I liked for more than a year. I finally wanted all of these things more than I wanted to be thin and it was terrifying. I didn’t know who I was without my ED and without it, I was going to be forced to actually live my life, which was something I hadn’t planned on needing to do. Without my ED, I would have to grow up and start doing really hard things without my main coping skill. But at the same time, I didn’t want to keep repeating the cycle of relapses and treatment. So I started prioritizing the things I cared about and started talking back to my ED voice. “I have to eat lunch because I need to be able to focus on work”, “I have to eat dinner because food is a way to connect with my boyfriend”, “Its okay if I eat this cookie because I am celebrating my friend’s birthday”.

Suddenly, I was feeling better, mentally and physically. I was living my values and I felt like my life had meaning beyond what my body looked like. I was able to go back to grad school and after 4 years of on and off treatment, I finally graduated with my Masters of Social Work. I definitely had, and still have days where that voice ruins my day and makes me feel terrible about my body. But those days don’t turn into relapses.

Now, Peter and I are married, I am a social worker at a prestigious children’s hospital doing such fulfilling work, and I don’t know what I weigh because being thin didn’t get me all of these things. In fact, I only got all of the good things in my life because I gave up the pursuit of being thin enough. I go to the gym because it feels good to move my body and my fitness goals don’t have anything to do with how much weight I can lose. I eat what I want, when I want it and most of the time, I don’t think twice about it. I still have some days where my ED voice is loud, but I am able to turn the volume down. I don’t like the word “recovered” but I finally stopped half-assing my recovery. I have considered myself in a full recovery for 3 years now. In the wise words of Ron Swanson, “Don’t half-ass two things when you can whole ass one thing”. I finally feel like I am “Whole-assing” my life and that is truly so satisfying in a way my ED never was.

The other day, I was working a weekend shift checking in with kids who were boarding on medical floors, waiting for inpatient mental health beds. I met a 17 year old who reminded me a lot of myself. I purposely don’t work with the ED population, while I am passionate about advocacy and education, I don’t think I am in a place where I can treat eating disorders long term. But this girl made me question that. She talked about feeling hopeless, and the years of invalidation when she wasn’t “thin enough” for an eating disorder diagnosis. She talked about how her plan was to white-knuckle it through treatment until she was a legal adult. She talked about how recovery didn’t seem worth it. And I flashed back to a time when I had said the exact same things. I wish I had had someone to tell me that recovery wasn’t something that immediately happened after treatment and that for a while, it doesn’t feel worth it. That it takes days and days of repetition and practice to master the art of ignoring the voice in your head. That it is hard work and eventually it does get easier and easier.

If there is one thing to take away from my experience, its that only “kind of” doing recovery may get you out of treatment but its no way to live a life. You can’t fully be who you want to be AND have your eating disorder. Trying to do both is exhausting and disappointing. So to everyone in that place, I see you and I feel you. It’s so cheesy, but trusting the process and fully leaning into your values does work. It takes time, and it’s so hard. But it works. I hope my story gives you hope and some reassurance.

Alekhya’s Story

The verb “consume” has many meanings. Eat, drink, or ingest (food or drink) — synonymous with devour, swallow, gobble. (Especially a fire) to completely destroy — the fire spread rapidly, consuming everything in its path. (To use up) a resource — electric vehicles consume less energy than the traditional gasoline engine. (Of a feeling) absorb all of the attention and energy of (someone) — she found herself consumed with love. Late Middle English: from Latin consumere, from con ‘altogether’ and sumere ‘take up.’

My body is an all-consuming entity. I monitored the food I consumed as my thoughts consumed every semblance of tranquility in my mind, consuming the energy I spent thinking, dreaming, hoping, living, consuming me with guilt and sadness and shame.

The first time my body became something actively consuming was towards the end of eighth grade. The girls in my friend group began playing a game I never quite saw the point of but would wait in earnest anticipation for the results: Who do you think the top five prettiest girls in the grade are? I wasn’t often on everyone’s list. But when I did make an appearance, it thrilled me to my very core. My body, my face, and everything beyond my control were evaluated more than my intelligence or humor or personality, yet it held so much more weight. Funny, we began to reduce our worth to two dimensions all on our own, doing nothing but damage no matter the result. Fourth-grade girls can be ruthless, but fourteen-year-olds are worse. In hindsight, I wonder whether that’s innate. I wonder whether it’ll get better in generations to come as we lose sight of the narratives that it’s a girl-eat-girl world. In 2015, however, that ideal wasn’t especially prevalent. Towards the end of the year, there was a book and movie that swept my grade and ended up having an inexplicably large influence on my body. Another piece that became all-consuming.

The Designated Ugly Fat Friend (The DUFF) by Kody Keplinger.

The book, on its own, was a powerful commentary on the nuances of high school popularity, body image, and pretty privilege. What the word “fat” begins to morph into when you hit teenage years. The meticulous scrutiny with which girls begin to examine themselves. The story follows seventeen-year-old Bianca Piper, who gets casually referred to as the “DUFF” of her friend group by a popular school jock and the emotional rollercoaster that follows. It ends with everything prettily wrapped up in a bow: she gets the guy, her self-esteem is intact, and she realizes true beauty is on the inside.

Real life, unfortunately, is not like that.

The moral of the story flew over everyone’s heads. “Who do you think the DUFF of our friend group is?”

“Hahaha, Alekhya, it’s probably you.”

All consuming. Shame, discomfort, a profound feeling of sadness and ineptitude.

It’s just a joke. Body dysmorphia.

The DUFF became a normalized part of our social interactions. “Alekhya, I look kind of ugly, can you join this photo so I look cuter?” Laughter from everyone, including me, even though I felt like a piece of thin glass that was lightly hammered, cracks spidering across dangerously, ready to shatter. Each laugh felt physically painful. What was this thing I was trapped in? What was this horrible prison of sexualization and repulsion packaged into one that I was forced to exist in and look through?

Crying in the bathroom, staring into the mirror so deeply I could trace every pore on my nose with my eyes closed. Glaring asymmetry. I began to lose sight of what I looked like, disassociating from reality and watching a stranger watch me with wide, sunken eyes.

It was just a joke it’s not a big deal don’t be a snitch.

My history class decided to film a movie for our final project. There was a screening. I played Susan B. Anthony in a modern-day rendition of the suffrage movement. I loved the role. Watching the movie play on the screen for my class, however, made me cringe. The white formal shirt I’d worn and tucked into a pair of pants was too big for me. The camera angle was unflattering. I looked unattractive.

“Wow, Alekhya, you look so fat here,” a friend of mine laughed. I joined in, embarrassed.

A few other people who heard laughed as well.

“Yeah, haha, weird angle,” I murmured. I wished the ground would swallow me whole.

Encouraged by the laughter, she proceeded to hit a final blow unknowingly. “Like

seriously,” she said between giggles. “I would starve myself to death if I looked like you.” I politely excused myself and headed to the bathroom.

That was the first time I forced myself to throw up.

I eventually left the school but took with it this new habit I’d picked up. I learned that I did not want to be the DUFF of any group. I wanted to be skinny. I wanted so desperately to be pretty enough. To not be made fun of or talked about or ostracized.

The Pretty Little Liars series was huge when I was in the ninth grade, its revitalized interest attributed to the wrapping up of their final season. Hanna Marin, one of the protagonists, had a fascinating plotline: a former fat kid who managed to redesign her entire identity by purging over the summer between her freshman and sophomore years of high school. She became the popular, pretty girl.

To me, it was aspirational.

What a great life hack this seemed to be. I could enjoy the taste of food without any of the side effects of eating it. I quickly figured out which foods made me feel sick the quickest. How to come up with convincing alibis to leave the table. How not to draw attention to what I was doing.

All consuming. Ironic, because I was trying to consume as little as I possibly could. The very thing I was avoiding was eating me up on the inside instead.

Two and a half years. That’s how long I worked tirelessly, hunched over a toilet at home, at a fast-food restaurant, at school, in a mall. The siren song of success as I heard my stomach rumble, vibrating to my very core.

Hair loss. Irregular periods. Mood swings. Brain fog. Constant hunger. At least I was getting skinnier. That was the goal, wasn’t it? That I’d finally be happy at the end of all of this?

I started going to the gym a little more. It felt almost shameful. Obsessively used the standalone cycle until my heart rate went over a certain number. Until the “calories burned” section on the blinking screen read only a number my eating disorder was satisfied with.

A few months into my quest for physical success, I opened my email to look through that day’s Teen Vogue piece. I read each one religiously. The association with pop culture and popularity was never too far off, right?

Demi Lovato Reveals the Heartbreaking Reason She Expected to Die Young “I didn’t

think I would make it to 21.”

I felt my heart rate speed up as I skimmed the article. I didn’t even know what an eating disorder was. But it sounded scarily familiar.

“What eating disorder did Demi Lovato have?” my Google Search question read.

Bulimia.

“What is Bulimia?”

bu·lim·i·a

noun. an eating disorder characterized by regular, often secretive bouts of overeating followed by self-induced vomiting or purging, strict dieting, or extreme exercise, associated with persistent and excessive concern with body weight.

“What are the harmful effects of Bulimia?”

Like all eating disorders, bulimia is a serious illness. It can permanently damage your body and can even be deadly. Bulimia nervosa is a potentially life-threatening eating disorder with severe long-term physical and mental side effects.

Only months into my eating disorder did I find out I even had one.

All consuming.

I couldn’t get what I’d read out of my mind. I knew this was worse than I could possibly imagine. The detrimental harm I was doing to my body. There was a newly created line that broke my stomach into two halves: the part of my body that bent every time I crouched in front of a toilet as if in prayer. It spread itself across my abdomen like a faultline taunting me with the proof of my self-destruction. I found that I hated my body even more.

I only recognized how imperative it was for me to stop when I became unable to do so. I stopped being able to consume anything without it instantly washing back up. Reflux and regurgitation hit me at different periods during the day: at school, at home, with my friends.

I still couldn’t stop.

I confided in two friends. They sympathized but visibly didn’t understand. I wasn’t sure I did, either.

I was scared. Felt guilty. Felt so deeply ashamed.

All consuming.

Months later, I won a “special mention” in a large model UN committee I’d just participated in. The boys from my school who had been there when I won the award informed me that they thought I had most certainly “flirted my way into the win.” While this was obviously an offensive thing to say for many reasons (and blatantly untrue), the very fact that they thought I’d have even been capable of a win via flirting rendered me speechless. I’d lost the ability to evaluate the way I was perceived by people. How pretty I was or wasn’t. In my head, I never stopped being a DUFF.

My best friend had come home as I chattered away about my accomplishment. She kept exchanging conspiratorial looks with my little sister.

“We need to talk to you, Aunty,” my friend said to my mom, who was sitting on our living room couch. “Without Alekhya.” They had shy smiles on their faces.

I smiled. A surprise. Christmas was coming up. How cute.

I couldn’t stop the smile from splitting across my face. “What are you guys planning?” I asked. “Should I leave?”

I stood up.

“Alekhya throws up her food,” she blurted. The next minute played out in slow motion.

I felt my heart sink to my stomach. I could faintly register that there was a conversation happening around me, but my ears were ringing loud enough to drown everything else. My mom was yelling at me. I felt tears stream down my face.

“HOW COULD YOU?” I asked, sobs wracking through my body. The betrayal stung like a million cuts, lodged in my throat, and suffocating me.

“I always thought you were smarter than this, Alekhya,” my mom yelled. “How could you be so stupid and superficial? How could you care about such stupid things? What’s wrong with you?”

Shame Guilt Sadness Anger Betrayal Humiliation Frustration Ineptitude.

All consuming.

My dad pulling me aside to talk to me; softer, but the same message. “You’re smarter than this. What were you thinking?”

I don’t know I don’t know I don’t know. I was now ugly and fat and stupid.

The next few weeks felt like hell. Suspicion, snide comments, yelling, violent disappointment in my stupidity. Monitoring when I went to the bathroom. An abject lack of understanding. A deep-rooted sorrow blossomed across my heart, seeping into every part of my body. I anxiously swallowed food, crying when I lost my coping mechanism. Abrupt, shameful cold turkey. Multiple members in the family talking to me.

Finding out the gossip had spread across the aunties in my apartment complex.

Alekhya has an eating disorder. So much shame.

“You don’t need therapy. It’s a waste of time. Anything that’s wrong, we can solve as a family.”

Doctor’s appointments. Endoscopies. “Does she have serious gastrointestinal issues?” Numb. Embarrassed. Disappointed. Ashamed.

I found ways to sneak in a few sessions from time to time, at random intervals. Used a public bathroom. The feelings didn’t disappear. I felt more unattractive and alone than ever. Somewhere, somehow, I believed I had lost an infinite amount of control and was left exposed and vulnerable, naked, without this shameful, horrible habit that no one seemed to understand at all.

What a strange thing it was to be an insecure teenage girl, convinced of your isolation when your turbulence is possibly the most relatable experience you could have.

Midway through my Sophomore year of high school, I announced to my friend over the phone: “I think I need to go to therapy.”

“Why don’t you?” he responded.

“My parents won’t let me,” I said. (It was true; the subject matter had been met with “you’re not crazy,” “what do you need it for,” and “therapy isn’t really a solution, Alekhya; it’s not in a therapist’s best interest to lose you as a customer. It’s not like a doctor, where they can tell you exactly what your ailment is and how to fix it and it’ll go away. It’ll be useless to try. We’re here to help.”)

“So what then?”

“I found this website,” I informed him. “Online therapy. I think it’ll be great. It’s like peer-to-peer counseling.”

I discovered 7 Cups of Tea when I was desperately combing the internet for avenues to work on my issues. I realized that not throwing up did not mean not actively thinking about my weight, looking at my stomach in the mirror, and knowing exactly which places I would snip off if I had the right scissors. Sucking in my cheeks and feeling the crushing guilt of enjoying a dessert. An all-consuming sense of inadequacy.

7 Cups is an online platform that provides counseling and therapy. The site connects

users to “listeners”, who have been trained in active listening, via anonymous text or voice chats. The site features distinct groups for adolescent minors and adults over the age of eighteen. Need Someone to Talk to? Our Counselors and Listeners Are Standing By.

Get started.

Except I did something that would change my life forever. I just didn’t know it yet. I signed up as a listener.

After a brief training session and quiz, I had the stamp of approval: I could talk to other people about their issues with eating disorders and weight management. And in some convoluted way, I felt like that would help me.

Around 3 months had passed since I had completely seized my binge and purge cycle. It felt odd – almost like a routine part of my day had been taken away from me.

I began to want to learn more about having an eating disorder. What it meant. How many people had it? Why it was never talked about. Why had it taken me so long to even recognize I had one, to begin with?

Being a listener helped. I found that the thing I needed most was to be heard and felt and seen and understood because I’d felt so perpetually stupid for doing what I did and caring so much about something so stupid and superficial. I wanted to know I wasn’t alone.

“No, you’re not crazy,” I wrote. “Having an eating disorder means you have a complicated relationship with food. Why don’t you try finding other avenues for positive reinforcement? Maybe use post-its and write down everything you think is good about yourself that has nothing to do with your appearance?”

Words I needed to hear. My own advice. I had ideas when I needed to help everyone but myself, and then I found ways to integrate them into my life.

The post-its worked well. It felt silly, so I kept it a secret. But I read it every morning and changed it every week.

I love that I’m always smiling.

I love my confidence.

I love my ability to become friends with anyone. I love that I’m a good writer.

I love that I’m always willing to learn new things.

I began to wonder whether I was actually changing people’s lives; even incrementally, even marginally. It felt addictive. It made me feel good, knowing that I could help. Then the reviews came in, displayed like a trophy on my profile: five gold stars and “[Alekhya] has helped me so much, I feel better about myself. She’s great to talk to, and I appreciate how much she opened up to me, too.”

A month into my experience with 7Cups, I stopped throwing up.

I wasn’t the best listener, though. I was a talker. But that’s how I realized I had so much to say, so much to share. So much to try to change.

I knew I had the benefit of open vulnerability.

“I’m a therapist,” I reinformed my friend. He started laughing. “No way.”

“Remember that website? Yeah, I actually signed up as a therapist. By accident,” the last part was a lie — it made for a funnier story when I pretended it was a silly stumble. And I hadn’t meant to sign up as a listener, but I hadn’t backed out when I did, either. “There was this quiz and everything. And now I’m talking to other people about eating disorders. Isn’t that crazy? It’s been really cathartic, though. And now I’m realizing I want to talk about it more. I think there’s so much people don’t know. I didn’t know a lot, either. I bet you didn’t.”

“I think that’s a good idea,” he said, earnestly. “And I think this is great.”

We both found out a few months later that his little sister suffered from an eating disorder. A case of anorexia. I was a listener, but strangely, almost more importantly, a talker — I’d spent so much time in my own head trying to figure it out that I could finally find words to describe what I wasn’t able to when I was dealing with it.

“It’s so nice to know I’m not alone.”

“You’re not,” I promised her. “There are days I still feel like this, too. But I don’t have bulimia anymore. And that’s already a step.”

Because all of this meant I wasn’t alone, either. That this was bigger than me, and I was a part of it, and now had the opportunity to help fix it.

I held a “positivity drive” towards the end of my sophomore year of high school. It was ultimately a relatively poorly executed event, but a fun one. I publicly talked about my experiences with bullying and eating disorders and body dysmorphia. I called upon other students to talk about their experiences with other rarely talked about issues – anxiety, depression, gender dysphoria, and neurodivergence. I organized self-esteem games and cliche “you’re not alone” speeches.

Within a week, seventeen girls texted me saying they had different variations of body dysmorphia and had never been able to talk about it before. Two boys.

Our bodies are all-consuming. What a funny thing to be trapped in, to fight against, to run and jump and play in, to love in, to hate.

In 2019, I started an Instagram page dedicated to eating disorders, body dysmorphia, and bullying awareness. It grew, by high school standards, relatively rapidly. I posted infographics and owned a rather drab website to publish articles and resources. It felt fulfilling. It was the graduated next step from 7Cups. I knew there were people who needed to know they weren’t alone.

I spoke to parents at an event I held about the best ways to communicate with their children if they had an eating disorder or were getting bullied. How to spot signs. How to respond with empathy. My parents had come a long way since their initial response to my eating disorder. They finally (kind of) understood it. They were trying to. And the parents in the audience asking questions and revealing to me that they thought their child had a disorder and didn’t know how to deal with it reiterated the need and importance for me to keep talking about my experiences to ensure people got the help they needed.

There was something self-fulfilling about working on body image as a whole rather than mine as an individual. By the time college rolled around, I’d become a passionate advocate for what I believed in. Recognizing people needed to hear my voice. But when I stood on the scale in my parents’ bedroom right after my first semester in college, I felt a sinking feeling in my stomach. I’d fallen prey to the notorious “Freshman 15.”

All consuming.

Being in college makes you painfully aware of the control you have over the meals you eat and don’t. It traps you in a chamber with people who echo each other, saying things like, “I’ve only eaten one meal all day” until it turns competitive. Until you’re stuck feeling like you’ve failed if you’ve indulged too much; like you have to give something else up to accommodate a treat.

I realized I had the benefit of cumulative knowledge. A platform and a voice. Realized I’d be a hypocrite for slipping into patterns I’d researched and learned from. I knew better than this. But all the knowledge in the world can’t save you from intrusive thoughts; from the quicksand that body dysmorphia can often suck you into. But I needed to pull myself up. Most people don’t even know they suffer from eating disorders. Most people are too trapped in stigma and shame to discuss what they’re dealing with; they need help and work and active attempts to understand an endemic that bleeds into so much more. Physical and mental health detriments become parasites to what’s swept 30 million Americans.

Eating disorders are, ironically, all-consuming.

I managed to find the light by surrounding myself with people who actively lifted me up. Focused on what I was good at: in school, in clubs, with hobbies. Started using post-its again to remind me of my worth. I am more than my appearance, my weight, and my numbers on a scale. My beauty is defined by so much more.

That for every pound I’d gained in college, I’d had a freshman “first.” Although I had been aware of the fact that my whole life had changed, it finally hit me that this was the first time in my life that I had been this independent. This was the first time that my parents weren’t checking up on my meals and how much I was eating, no one was watching over the (steadily dwindling) hours of sleep I got, and no one noticed the changes I had faced. I had just been thrown into an environment where I knew no one and had never lived on my own. There are emotional ups and downs. Seasonal depression. Drastic changes in social life. Intense workloads and pressure. Self-imposed budgets, deadlines, and rules. A totally different cuisine and style of meals than the ones I was used to back at home. Of course, I was going to have gained weight in the process. I had so much on my figurative plate that it was hard to keep something as irrelevant as food quantity control in mind.

I realized that I probably would never step back onto my weighing scale having lost the weight I’d gained in Freshman Year. That I might even gain more. But I realized if I can attribute a new wonderful experience for each pound, no matter how big or small, then that’s weight well worn.

Because there will always be changes in my life; changes which will impact my relationship with control and food. Turbulence I haven’t seen yet. Heartbreak and job searching and stress. I imagine that I’ll experience more complications with my body: pregnancy, growing old, wrinkles, weight changes. But the fact that this body with all its skin and fat and bones can go through this many changes and still be there for me is such a beautiful thought. That this body works with this mind to speak in front of you all today and share my story. To learn more about yours. To nourish it for all it does for me is a privilege.

What an honor it’ll be to live and laugh and grow old in my body. To wear those wrinkles and fine lines and stretch marks.

To really love my body — what an all-consuming feeling.

Alexa’s Story

My journey started like many other young women my age. Surrounded by people talking about their latest diet and their recent drop in weight, made this topic very normalized. The constant talk around if foods were good or bad was a very common conversation for many families.

Growing up I loved food. I remember when my family went on vacations I would look forward to when it was the next meal because it was fun, exciting and new vacation food. I freely enjoyed a variety of foods without ever giving it a second thought. Food was a meaningful part of my relationships with family members, including my grandparents.

I had a lot of friends growing up. I did competitive gymnastics starting at age 6, I went to a sleepaway camp from ages 10 until I was 16. I had lots of friends at school and was overall a very social kid. I always had a smile on my face, people would say that my smile lights up the room.

I’ve also always been the short one in the group. Growing up I would always be the little cute one in class or on my gymnastics team. My coach’s nickname for me was peanut. My head was always the arm rest for my tall friend’s arms.

When I was in 4th grade my mom brought me into the endocrinologist, if you don’t know what that is, doctor who specializes in the endocrine system and the network of hormone producing glands in your body, including the growth hormones. My sister had been on growth hormone shots for a few years by then as she was even shorter than me. I will always remember that appointment when I was asked, as a 4th grader, if I wanted to get growth hormone shots.

I immediately said no. Other than the fact that I was deathly afraid of needles, I was also deathly afraid to not be known as a peanut anymore. The world around me made me feel like I wasn’t worthy if I wasn’t the smallest version of myself. Being offered this felt like they wanted to set me up to be a failure in life. I always feared the day someone would not call me cute and little anymore and I did not want that day to have to come faster.

As the years went by and my body started to change, as it always will as a growing teenage girl, I started to feel that I was no longer that cute little peanut girl. While I was going through my little quarter life crisis about not being a peanut any longer, the world around me was telling me how to continue to be that peanut. Social media videos of petite girls making diet and fitness videos was all I would watch.

I started to restrict my diet at around the age of 12. I will always remember the stress I had before my bat mitzvah, not because of how I had to memorize long paragraphs in a completely foreign language, but because I wanted to look skinny in my dress for the pictures.

Following my bat mitzvah in 7th grade, I had a very hard time my last year of middle school. Mean girls made my life a living hell. Girls who I had been friends with for years would make fun of what I brought to school for lunch, asking why I didn’t bring a salad like they had. They would make fun of my body asking why I gained weight and why I was no longer my little peanut self. This only fueled the eating disorder I did not know I had. Since the majority of middle school my main focus was to stay in the “popular” group. When they criticized me saying I had to be someone different, my main focus was to make them accept and like me.

High school was a huge transition. At the end of my 8th grade year, after many talks with my parents, I decided to cut off contact with the mean girls. Going into a brand new school, double the size of my previous one with no friends was truly a rude awakening. I would sit alone at lunch, sometimes eating in the bathroom or I would beg my mom to pick me. This was extremely lonely. I felt like no one understood and that no one wanted to understand. I would constantly isolate which did not make making new friends easier.

Gymnastics has always been a huge part of my life. The gym is where I felt at home. I loved my friends and coaches, it always felt like my safe space. Gymnastics was always my escape from the real world, I got to be with my best friends doing the thing I loved most. I had always looked up to the girls who  were on the Natick High School gymnastics team and I was so so excited to finally be on it my freshman year. My club coach Rusty was the head coach of the high school team so I already had a familiar face going into tryouts that first year.

Starting at 10, I went to sleepaway camp every summer in New Hampshire. As cheesy as it sounds it was my home away from home. 7 weeks with no phone, no contact with the real world, living with 30 of my best friends. What more could you ask for? Having two places that felt like home, camp and the gym, it was hard for me to be in one place when I felt I had to be in the other. That summer I felt guilty for not being with my gym friends during that hard time, but I knew to keep my spirits up I had to stay at my other home, camp.

During my last summer as a camper in 2019, one of my counselors had to give me the terrible news that my coach Rusty had passed away of a heart attack.

Rusty was one of a kind. If you were lucky enough to have known Rusty, you would know that he is the main character. He dressed up, either wearing one of his ties from his very large collection. Or he would wear some crazy shoes, from who knows where. His personality was huge. He was always smiling and cheering us on as a team. His passing was very hard for me as I could not be home with my family during this hard time. I felt a very large loss of control after his passing as there was nothing I could do about it.

That next school year was hard. My safe space, the gym, didn’t feel the same. Rusty’s presence was so large there was a hole missing at every practice. High school gymnastics season was hard, that season was always his favorite time of year and without him was not easy.

With the loss of control of losing Rusty, I started acting on eating disorder behaviors more than I had in past years. I started to lose my love for the sport I had loved forever. The fun I used to have at the gym turned into non-stop thinking about how I can burn more calories during practice.

Just like many teenagers my age, COVID quarantine was a struggle. Empty days stuck in your home with just you, your family, and social media. Creators with huge platforms like Chloe Ting, created videos promoting false facts regarding food and exercise. During those long days where everything in the world was changing on a daily basis, just like many others, I felt like I had zero control. With the lack of control going on in the world around me, I felt that the one thing I could control was my food intake and my exercise routine. Being home all day gave me plenty of time to be in my eating disorder.

Since I grew up surrounded by diet culture, I thought getting “healthy” meant losing weight, getting lean, and eating minimally. I tried every single fad diet I saw on tik tok. Everything from taking detox concoctions to juice cleanses to intermittent fasting. I would follow youtubers 10 day programs to “get skinny for summer.”

My weight was dropping. I felt a second of happiness when I saw that number. But every other second of my days were surrounded by awful thoughts regarding my body and stressing over if I ate even a single bite over what I had planned to do. I was depressed and anxious. I was in constant fights with my family, my OCD was off the rails, and I was genuinely a miserable person to be around. If I wasn’t in the basement working out or planning my days of what I would eat, I would be sleeping. My depression led me to not brush my teeth enough, I rarely showered, I only brushed my hair when I was told I looked like I rolled out of bed. My anxiety made me have panic attacks almost daily, and my OCD had me doing hours of routines before I was able to go to bed. This time in my life was extremely dark and exhausting. I had no idea why my depression and OCD were so bad, I thought it was normal. I didn’t really know what poor mental health looked like so I thought I was just upset that we were in quarantine.

On April 9, 2020 my mom sat me down. I had not been myself for the past few months and as a mom she knew my real self was spunky, bright, and bubbly. Given the daily panic attacks, the non-stop sleeping, and so many fights, she decided to talk to me about what was going on. I had been holding this secret for so long about my poor relationship to food and body. The world around me made it seem like this was normal and that everyone felt this way. The world really normalizes eating disorder behaviors. Not until that day that my mom sat me down did I realize that I had an issue.

From that day on it was an uphill battle. My mom did lots of research about eating disorders in teens and how to help them. We started to meet with an FBT therapist for the whole family. FBT is “Family Based Treatment” and it is where your parents or caregivers plate all of your meals and snacks, and for me, my parents sat with me for every single meal and snack. This was a huge challenge for me, it caused daily fights and so much unwanted tension in my house.  When I tell you I never spoke a single word on those calls, I mean it. My mom had me meet with a therapist, and again, they were pulling teeth to get me to speak.

That summer was hard. I was attempting to eat 3 meals and 3 snacks every day. I hadn’t eaten 3 full meals since probably 5th grade so this was a huge change. I would cry after every single bite and fight with my parents that I was done even though there was still food left on the plate. Some days I got away with it, others I did not.

It wasn’t until I met my dietitian, Melanie, that I started talking about my thoughts. After some time she finally cracked my shell and I was able to talk about what was really going on underneath the behavior use. She taught me what exchanges were and the science behind food and how it makes your body and mind feel. I started meal supports and challenging fear foods.

That fall, I did a program through my dietitian’s office. This program was for patients with eating disorders who either are stepping down from higher care or just need a bit more care than outpatient care. This was the first time I had met someone who was struggling with issues like me. It was super motivating having a group of girls who I could relate to. As amazing as that was, I struggled with every meal at the program. I struggled with comparison and having others watch me eat. Comparison is emotionally exhausting. One of my favorite quotes is “comparison is the thief of joy.” Constantly comparing your body to every single person around you gives you no breaks to be alone with yourself. Struggling with having others watching me eat was a very hard obstacle to get over. I felt ashamed that I was eating enough. After about a month or so, I decided to leave this program.

From the course of April 2020 until February 2021, I met with 4 therapists. I was always super shy around adults and even anyone older than me. I did not like anyone who was trying to combat my eating disorder so I kept telling my mom I didn’t like the therapist’s personality.

In late February 2021, I met a new therapist, Liz. Something with her just clicked with me. She was laid back but if there was an issue she was there to be my therapist. She always lets me speak when I want to speak, but understands when I am feeling nervous to talk. I still to this day see her and I now look forward to meeting with her every week.

I was always scared of getting on medication. It was always brought up in therapy sessions about how helpful it can be. I always said I want to be happy for real, not by medication. To be fair, I do not think that medication makes recovery unreal or any less – for me I always felt pressure to recover without it. Regardless of whether or not you’re on medication, you as the person in recovery get full credit for that process. Medication is just a resource that you use in the process. After much convincing, I started my first SSRI. This process was super frustrating. The first medication I tried made me even more depressed. The next led me to have more panic attacks. After trying around 6 SSRIs, I finally landed on one that made my days a bit less miserable.

In July 2021, my family went to the Cape for vacation. I was in an okay spot      in recovery where I was completing most of my meals and was weight restored. This vacation sent me into a spiral and eventually made me relapse. Being in a bathing suit all day, all week long, comparing my body to others on the beach, and seeing my own body in photos and the mirrors sent me spiraling. That vacation I started to restrict again. My parents gave me a bit more freedom with my food choices that week, as we were on vacation. With this new freedom, my eating disorder began to take control of the food I ate.

The rest of that July was super hard. I got in many more fights with my family, not even just about food. Eating disorders tear up relationships, when you are malnourished your brain is not fully functioning so, for me at least, I started unnecessary fights with my loved ones.  My depression, anxiety, OCD were back, very strong, and I was out of my range.

After many conversations with my team and family, they decided a higher care would be the best route to go in. My mom did lots and lots of research on places, and eventually my team and parents decided to send me to one that was out of state.

Missing the start of my senior year of high school was not ideal but I knew I needed help. I kept getting told that going to a higher level of care would make this process quicker.

My stay out of state was far from easy. I still get nightmares about what happened in that building to this day. The care there did not help me with my thoughts, but it did scare me that I would have to ever go back to a place like this. The eating disorder treatment system was incredibly messed up, and not only left me, but others with PTSD.

After a traumatic 5 week stay, my team from home let me leave. I ended up finishing PHP and IOP at home. These two programs were like night and day. I felt seen and heard at the program near home. I felt I could be who I wanted to be and not be judged for my past behaviors.

Once I was finally stable, I was allowed to practice gymnastics again. The sport I had lost all love for was coming back into my life, but this time I really appreciated it. I learned that I cannot take this amazing sport for granted and I have to enjoy every second. I got to participate in my senior season of high school gymnastics and be the captain of the team.

After spending a quarter of my senior year not in school, I never thought I would get into any colleges for the following year. I thankfully finished all of my applications before I left for treatment, but had very little hope about any acceptances.

I will always remember getting my first college decision letter back. I was sitting in math class when I got the notification of a status update. I immediately ran to the bathroom as my heart was racing a zillion miles an hour. I go into a stall, lock the door, and sit down on the toilet. I pulled up the email, closed my eyes and hit the open button. I kept my eyes closed for probably 10 seconds then opened them. When I tell you I screamed, I really did scream. I had just gotten into freakin college. For those past 2 years, I had told myself I am going to be a failure in life and that I had no future. Seeing that “Congratulations” at the top of the letter was a huge sign that my life may mean something.

After the next month or 2, I had gotten 5 more college acceptances. I got into every single one of the schools I applied to. I was never the smartest one in class, I wasn’t in 5 AP’s or honors classes, I had failed tests, and I sure as heck did not have straight A’s.

I committed to the University of New Hampshire in March of 2022. Growing up around older counselors at camp who were in college, it had always been a dream of mine to go to school and because of my eating disorder I NEVER thought that dream would become a reality.

In recovery, seeing wins can be a very tricky thing especially because so many wins aren’t obvious. Graduating high school was one of my first wins that really made me think about the past two years. Walking across that stage and getting my diploma made me realize what recovery is all about. It is not all about weight     , it is not about proving to people you can eat. It is about those wins, big and small ones every single day. It is about proving yourself wrong time and time again. It is about making your loved ones proud of you. It is about making genuine relationships and rehashing ones you may have lost in the past. Recovery is a lot more than just eating. During recovery, you find the person in yourself that you had lost for so many years, and you better yourself each day.

Going in to college I was terrified. The last time I had been away from home for a long period of time was I was scared I would be trapped there similar to how I was when I was in treatment. The first week of school was hard, as it is for the majority of incoming freshmen. The transition is very rocky for many students. Everyone is homesick at one time or another. No one had been in a situation similar to their first year at college, and getting used to living away from home is tricky. Getting adjusted to living on your own for the first time is not an easy thing. You have zero parental guidance for your day to day living. For me, this was a breath of fresh air. I have a new beginning, a new start to life. No one here knows me or my past.

I decided at the last minute to do recruitment to eventually join a sorority.  While this process was stressful, it broke me out of the shell I had been in for so many years and got me talking to girls who I usually would never talk to. For once, I actually felt like myself. I ended up joining Alpha Chi Omega and I have met my best friends there already. Going through recruitment made my world so much bigger, I got to see that there are some pretty amazing girls in this world who care for each other day after day.

My freshman year at UNH was the best year of my life, so far! I learned not only academics, but so many valuable life lessons along the way. I learned how to properly fuel myself on my own, how to set boundaries with friends and family, how much alcohol is too much alcohol, but most importantly I learned how to love myself.

This past spring I joined a community of girls who struggle with eating disorders and starting to weightlift in their recovery. With the loss of no gymnastics in college, I decided I needed a new outlet and when this opportunity arose I jumped right on it. This amazing group of strong women have not only supported me when starting my weightlifting journey, but have also supported me when I am having an off day, or cheer me on after I have a big or even small win. Having a community surrounding one another has made my hard days just that much easier. Keeping my eating disorder in check when lifting has been a bit easier because I took a long break from any movement. Slowly being healthy enough to bring movement back into my life, I don’t take it for granted.

If I were to give someone struggling some words of encouragement, it would have to be that things do get better. When you are in the darkness of your disorder it may seem that there is no light at the end of the tunnel. I am here to say that it is there, it just may be a bit farther down the path. You have so much resilience in you, you just have to be willing to share it with others. Recovery is not easy, but damn is it worth it.

Alison’s Story

In elementary school, I was one of those kids who seemed to have it all together – I was respectful to everyone, responsible, got good grades, and never turned down an opportunity to be creative. I loved participating in theater productions, writing, playing the flute, and doing craft projects. According to my report cards, I was “a pleasure to have in class,” and “an attentive learner.” I loved the praise I received for doing these things. In retrospect, my self-worth was based on what other people thought of me. I wanted this validation so that I could hide how I truly felt about myself. I could hide the internal shame I felt. In my mind, if I was not perfect and other people didn’t like me, nothing mattered.

As a twin, I never truly felt like I had my own identity. When I got recognized for my own achievements, I felt like I was finally seen as an individual. To keep this recognition going, I began to set unattainable standards for myself and beat myself up when I didn’t achieve them. My shy and anxious personality only elevated these feelings. To compensate for this insecurity and self-loathing, I put my energy into being perfect in other areas of my life. I needed to please people, and put other people’s needs in front of my own. I felt that I had to live up to astronomically high expectations I set for myself.

My mind had the ability to turn any situation into a criticism. If I answered a question correctly in class, I was a teacher’s pet. If I was quietly listening to someone, they thought that I didn’t care about what they were saying. If someone complimented me, they didn’t mean it. I began to withdraw from my peers, and I felt safer just keeping to myself and avoiding social interactions. My body image was so negative, and I would always compare myself to my peers, who all seemed to have smaller bodies than mine. They seemed happy, and I was desperate to obtain this happiness. I had heard about dieting but wasn’t really sure how to do it. Then came a health class with the information I needed.

In second grade, we had a health class focused on nutrition, and the main message conveyed to me was that I had to be thin to be healthy. I learned what calories were. Emphasis was placed on the importance of exercise, and we looked at the food pyramid. We were told about so-called “good foods and bad foods,” which got my perfectionist brain really excited. My mind told me that I could cut out some foods in the name of health. I vowed to myself that I would lose weight.

I hit puberty at age 9, well before any of my peers. My body seemed to change overnight. The changes were very painful, physically and emotionally, and the lack of control I had over my own body was terrifying. I needed a way to take back control over my body, and I thought, “Well, at least I can control what I eat.”

To recap, I was an anxious, insecure perfectionist with identity and body image issues, and dealing with undiagnosed anxiety and depression. I called myself stupid when I couldn’t grasp certain concepts in school or had trouble focusing. I had this feeling that there was something different about me that I didn’t know how to put into words. Because these feelings didn’t have words, and I was too young to process them, I subconsciously used my body to talk for me.

I committed to dieting in 5th grade. This dieting behavior changed my mindset around food and weight – I classified foods as “good” and “bad,” and I punished myself when I ate “bad” foods. I denied myself foods that I really liked because I was terrified that they would make me gain weight. I didn’t care that I didn’t feel good. I convinced myself that I was being healthy, because, in my mind, losing weight was synonymous with health and happiness. I was anxiously and dreadfully anticipating the change to middle school. At the beginning of 6th grade, once again, I felt like I had no control in my life. I was being thrust into a new school building, with many more peers, new social dynamics, more homework, more rules, multiple teachers, and more pressure to succeed. Suddenly, appearances mattered more – girls began wearing makeup and clothing that showed off their bodies. It felt chaotic and awkward and confusing. I felt like a small fish in a big pond. It was around the summer between 7th and 8th grades that my desire to lose weight turned into a voice in my head saying “You need to lose weight.” This voice told me that it had my best interest in mind. It would help all my insecurity and painful feelings disappear. It promised that it would take care of me. All I had to do was listen to it and do whatever it said. It felt like a security blanket. I pulled this blanket tighter and tighter around me until I could no longer breathe. In October of 2005, at age 14, a trip to my pediatrician’s office confirmed everyone’s growing suspicions in two words. Anorexia nervosa. I learned that the voice controlling my every move was the eating disorder voice, or as I called it, Ed.

My life revolved around acting on eating disorder behaviors and going to appointments. I began therapy and nutrition counseling, and continued seeing my doctor very frequently to monitor my perilous physical health. I would spend hours every week talking about my behaviors, feelings, and food intake, all the while believing that no one could make me stop. And I didn’t want to stop.

As my weight decreased, the compliments increased. People were telling me that I looked good, and asking me how I was losing weight. I felt noticed and admired. As the walls were spinning around me, I was given the message that I was doing the right thing. This praise felt really good, and I continued down this path of self-destruction. I was consistently angry, ornery, and sad, often directing my anger at those who did not deserve it.

The human body can only handle so much stress, and despite my thoughts of invincibility, it was reaching the tipping point. I was at jazz band rehearsal one day after school when I stood up and everything went dark. The next thing I remember is coming-to in the nurse’s office. I opened my eyes to a bunch of people standing over me telling me that I had passed out. I really, truly did not believe that I had passed out, because I had to be sick to pass out, right? And I was brainwashed by my eating disorder into thinking that I was not sick.

My eating disorder did not only wreak havoc on my day-to-day life. Any event where food was present was avoided, so I missed birthday parties, eating out with friends and family, and there were many Thanksgiving dinners with my extended family that I missed out on. I don’t remember much about those Thanksgivings, but I do remember not sitting at the table with my family, eating food that I had brought alone in an unused bedroom in my aunt’s house, and being in a constant state of anxiety because food took precedence over everything. I was engaging in the eating disorder to drown out the pain I felt in my life. In the end, though, the pain that my eating disorder caused me is all I remember about those Thanksgivings. I was so embarrassed and ashamed to have this illness that made me stick out like a sore thumb. I felt like no one understood what was going on, and it was awful to suffer through those times alone, even when I was surrounded by family.

I continued to struggle during my high school years, and I nearly got kicked out of National Honor Society because my grades dropped. I was forced to leave a Spanish immersion camp that I was excited about. I had to leave jobs. I had to drop out of the school marching band, which had been a lifelong dream of mine, because my body couldn’t handle the long, intense practices and performances. Shopping for a prom dress was miserable, because I bawled my eyes out in the dressing room, so disgusted with my body.

In my junior year, I remember coming out of an appointment with my dietician, who had given me a list of foods to eat for the coming week. I sobbed out of fear and frustration. It wasn’t just that I didn’t want to eat all of that food – I couldn’t eat all of that food. With the support of my therapist, I made the phone call to a local treatment facility. Not too long after that day, I was admitted to residential treatment. I was overwhelmed and anxious, and kept asking myself, “How did things get so bad so quickly?”

Treatment was the hardest and best choice I made for my recovery. Being forced to stare down my eating disorder helped me dig deeper into the things that perpetuated it. My eyes were opened to just how sick I really was. Getting that wake-up call lit a fire in me to turn things around. I became aware of the importance of eating the amount I was told to. If awareness was the key, eating was the lock. I could try many keys as I wanted, over and over, but there was no way around the fact that I had to eat. Meals often resulted in tears of frustration and fear. It was incredibly painful, and necessary. That frustration meant that I was able to separate my voice from Ed’s voice, and this was the first step towards my recovery. It was helpful to talk to the other clients in the program that were struggling with the same sort of issues I was, because they truly understood it.

I had to miss school during this time, and I was extremely self-conscious about what people would say and how they would treat me when I returned. What if they asked me where I was? What would I say if they asked what was wrong with me? Would they figure out where I was? What if someone commented on my appearance? My high school guidance counselor was helpful in writing notes to my teachers explaining the situation and helping me figure out a plan to make up the work I missed. My therapist helped me come up with a plan to navigate these things before I returned. She mentioned the possibility of saying that I’d rather not talk about it, but I felt like that would lead to suspicion. I told people that I was sick and left it at that. Most people got the hint and let it go. I was generally appreciative that people cared enough to ask, and I also knew that I didn’t owe anyone any information. I did end up being open with some trusted friends that I felt safe talking to, and it was helpful to have additional support at school when eating lunch, or just wanting to feel like a “normal” student.

Treatment and having extra support were helpful, and it also didn’t mean that my eating disorder magically vanished. I was still very insecure and had all those same feelings from my childhood, and I used behaviors to manage this discomfort.

As I nourished myself consistently, I began to face the issues that I had subconsciously blocked out with my eating disorder. I did a lot of journaling. I cried. I learned more about myself than I ever thought possible. I learned that the further I spiraled down the path of my eating disorder, the harder it would become for me to get to the issues behind it. I realized that my thoughts were just as sick as my body was. I had lost touch with my entire being – mind, body, and soul – when I was consumed by eating disordered thoughts and behaviors. My illness tricked me into thinking that it would provide things for me that I felt were missing in my life.

When I began experiencing my emotions that I had numbed out with my eating disorder, it was overwhelming and I felt so raw. I realized what my treatment team had been trying to tell me: emotions can be uncomfortable and tough to deal with, but they cannot hurt me – my eating disorder can, and did, hurt me.    

Even with this change of mindset, I truly believed that I was the “exception” to those recovery stories I often read online that said things like “recovery is possible,” and “life is better after recovery,” but couldn’t grasp that possibility for myself. Over the course of treatment, my sense of hope fluctuated. I was fearful of having to eat and face my eating disorder, and I also felt a sense of relief that I was getting the help I knew I needed. I regularly questioned my decision to be there. I was constantly thinking “I can’t do this,” and “this is too hard.” Over time, I started to think that, just maybe, I could get better.

My motivation to recover started as a teeny, tiny light inside my heart and the thought that maybe life didn’t have to be like this. I was tired of fighting with myself, with my eating disorder, and with those around me. Tired of food ruling my life. Tired of feeling weak and lying to everyone. It was time for me to be honest. I was so tired of living a double-life of sorts – one life as a perfectionistic, slapping a smile on my face to feign happiness and please everyone; and a second life where I was pessimistic, angry, and defiant human. I lived in a shell of myself.

I was fearful of the loss of control I thought I would experience if I did not listen to my eating disorder. Ironically, fear began to work in my favor. As time went on, living with my eating disorder made me scared. I was afraid of what could happen as a result of my declining health. I was afraid that I would never get to do the things I had dreamed about. I went from fearing life without my eating disorder to being afraid of what my life would be like if I kept listening to my eating disorder. I was scared of what my future would look like if I continued down this road of destructiveness.

The first step I took to finding motivation was to get better for other people in my life that wanted me to recover. Although the ultimate goal, according to my clinicians, was for me to find intrinsic motivation, I could not yet do that. The desire to get better was there, but the reasoning was not. I knew that I didn’t want to go on living like this, but I was extremely fearful of letting go of my eating disorder. I thought about how my family was affected by this, and realized that I didn’t want to be a cause for their constant worry. After I felt confident in believing this, I began to think about the positive things that could happen in recovery. I could go to college, get a job, go out with my friends for ice cream (and reclaim my love for it), travel to Spain, and maybe even write a book.

Even though I wasn’t totally sold on giving up my eating disorder, I had the motivation from others around me to fully commit to recovery and make it a priority. I knew if I went by my own timeline I would hem and haw and debate. In the process of getting motivation from others around me, I gained a little more motivation for myself, too.

I learned that, like it or not, engaging in the recovery process meant making sacrifices. There were times I had to attend treatment instead of doing fun things with my friends. I missed family gatherings, school events, and parties, and I often had to do my homework in the car when my family would drive me back and forth from treatment. Making these sacrifices helped me realize how important recovery was to me. I wouldn’t sacrifice all of these things if I didn’t want to get better. That’s when I realized I had intrinsic motivation to get better. It took a very long time. It wasn’t a situation where I just woke up one day and my mindset changed. Rather, after such a long struggle, I finally came to realize that my eating disorder was not helping me anymore.

I often think about the paradox of the way I rearranged everything in my life to accommodate Ed, and in recovery, I had to rearrange my life once again to kick him to the curb. It wasn’t easy to take time away from these other things in my life. It involved a lot of anger, tears, and guilt. Looking back, putting recovery first allowed me to enjoy many more things once I got better.

I realized that the relief and comfort I felt when obeying Ed’s rules was only temporary. All the stress and pain that I’d been numbing out came right back when I would feel guilty about my behavior, and the eating disorder voice would become louder. The more dependent I became on these thoughts and behaviors, the farther I was from a long-lasting resolution of the emotion or situation that led to them in the first place. My stress level remained the same and I hadn’t done anything effective to resolve it. I didn’t want to live in this never-ending cycle of torture.

In my heart, I was not elated by using eating-disordered behaviors – my eating disorder was the one who was elated. I learned to be angry at my illness, not myself. I realized that I was not selfish for having this problem – my eating disorder was the selfish one. Ed didn’t care about me or how I felt or what I wanted. He didn’t care if I was incredibly stressed or sad or exhausted. He wanted me to be alone. Ed promised me that he would help me achieve my goals, and that if I listened to him, I would be successful. Ed’s goals and values are not the same as my goals and values. The only goal Ed had was to make me miserable. He wanted me to base my self-esteem on staying ill. I realized that I wanted to chase my aspirations in life more than I wanted to chase the false sense of comfort that my eating disorder gave me.

I knew that I couldn’t do this alone. Even though I was in therapy and nutrition counseling, and seeing my doctor regularly, I began to seek out more support to help me in my everyday life.

In all honesty, my family did not always understand how to help me. Even when they did not know what to do, they did not give up on me and were always there for me when I needed them. I could not have gotten through this without their support. They put a lot of time and energy into helping me. They rearranged their work schedules, spent a lot of time in therapists’ and medical providers’ offices, and spent countless hours talking with the insurance company. They sacrificed a lot of their plans. They visited me in treatment, and made my meals when I was too deep into my eating disorder to make them myself. They put up with a lot of stress, anger, arguing, frustration, and emotional meltdowns. Most of all, they believed in me and loved me through the worst of times and in better times.

My middle school guidance counselor was the very first person to know about my eating disorder outside of my family. She was responsible for helping approximately 100 eighth graders succeed in school, and I never felt like I was “another student in her caseload.” When I was unable to eat lunch in the cafeteria. she got me permission to eat lunch in a vacant, quiet office near hers, and came in to check on me whenever she could. After I got a lot of questions from other students about where I disappeared to at lunch, she helped me figure out what to say. There were a lot of times where I went into her office crying, and every single time I left smiling, because she always knew what to say to make me feel better. No matter how busy she was, she always made time for me and offered encouragement. She saw beyond my eating disorder when I couldn’t, and that is something I cherish to this day.

Ed kept me trapped and tried to confine me to an identity. He promised me that he could give me a unique identity, but that identity was not actually as unique as I thought, given the number of people who struggle with eating disorders. The recovery process freed me to explore my identity, and I could fill my time with things that mattered to me. I learned more about my passions, and I did some deep digging in therapy to find my sense of self that was suffocated by my eating disorder. This was exciting and painful at the same time. One of the deeper things that came up in therapy was reflecting on that sense of feeling different than my peers but not knowing exactly why.

As I sat in the chair across from my therapist each week, I discovered more information about myself and finally started to understand what clinicians had been telling me all along – eating disorders are not about the food. Food is the coping mechanism to deal with pain. I did a lot of work around finding my identity as an individual. We talked about skills, hobbies, interests, and other aspects of my unique identity. We gradually moved to deeper aspects. When I was 17, my therapist asked me if I had ever thought about my sexual orientation. I was so caught off-guard and I don’t remember what I said. My heart began to race and I felt really anxious, because I had never thought about it and was at a loss for words. Over the course of many more therapy sessions, I came to the realization that I was a lesbian. And that was that feeling of being different than others. Suddenly, everything made sense – this feeling was related to the fact that I was a lesbian, and I was never able to identify it because my eating disorder repressed it.

Initially, I felt uncomfortable about my sexual orientation. It wasn’t so much about being attracted to girls. It was about how I would be treated if others knew that about me. My anxiety kicked in and posed all kinds of questions: Would people judge me? Would I lose friends? Would I be looked at differently? What would my friends and family think? Did I want to be in a relationship? How was I supposed to know who was a lesbian and who wasn’t? Would people be supportive? These thoughts consumed me for a long time, and I relied on my eating disorder to suppress these anxious thoughts. I was scared to come out because I thought people would judge me, and maybe treat me differently.

When I was in my eating disorder, I felt so much shame and guilt around the behaviors I used and how these behaviors impacted others. I wish I had someone to look up to that lived through an eating disorder, someone to tell me that recovery really is possible. Writing and sharing my story has given me the opportunity to be that person for someone else. I don’t have all the answers by any means, and what worked for me won’t necessarily work for someone else. I always encourage people to take what works and leave the rest. Explore what options are available to you.

My family would get frustrated a lot, and that was absolutely valid. With the help of my treatment team, they learned to vocalize that they were frustrated with the eating disorder, not me. It really helped when people asked what I needed. Making a choice of what I needed gave me a sense of autonomy – in recovery, we are not often given opportunities to choose. Sometimes I didn’t know what I needed, and people offered options. Did I want to eat lunch in the cafeteria or in a private space? Did I want to work on a puzzle or watch tv after a meal to distract myself?

On the other hand, I mentioned earlier that people complimented me on weight-loss. This is not something to be celebrated, despite the messaging we are given from society. I was encouraged to continue down a dangerous path. If you want to compliment somebody, use a non-appearance based one.

Recovery taught me a lot of lessons about myself. For so long, an eating disorder defined my value, self-worth, self-esteem, and character. Now I define these things, and I can grow and learn every day. My self-worth is no longer defined by food – and it is not based on any one thing.

I always thought I had to have everything figured out, and that there was some sort of timeline for life. I remember applying to colleges and feeling this self-imposed pressure to make this big decision that would supposedly determine the course of my entire future. With this time of transition and chaos, I once again ran to my eating disorder, because it was familiar and took my mind off the stress I felt. In reality, Ed caused me more stress. Through my experiences in recovery, I became aware that life doesn’t have a timeline. Getting treatment meant that my life was put on hold a few times, and that delayed my perceived timeline. Putting recovery first allowed me to get much more out of everything I did, and that was the important part. There’s no timeline for life experiences or for the recovery process.

In therapy, I learned that my eating disorder was not my fault. I always thought that maybe if I had done something differently, this wouldn’t have happened to me. I blamed myself for all the things that happened to me. I was convinced that it was my fault for everything that happened to me. I blamed myself for being a source of stress for those around me, and it was my fault that I had suffered so much.

When I was in treatment for the first time, I decided to start a binder filled with all the notes of encouragement that I had ever received. It was incredibly helpful, and it was a fun craft project too! I decorated the front with stickers and decided on the layouts of the different pages. I go back to this binder whenever I need encouragement or a pick-me-up, and I still add to it. Encouragement is applicable to life outside of eating disorders too!

The number of times that I have heard the phrase “trust the universe” recently is remarkable. My experience going back to school was definitely meant to be. For a long time, I told my therapist that I wished I could go back to school, and that I wanted to go into social work. The desire was there, but the self-confidence wasn’t. I doubted that I could ever get into grad school and tried to talk myself out of it. I was afraid of rejection. My therapist told me that there was no harm in just applying for a program and seeing what happens. I decided to take her encouragement and go for it. I submitted an application to the Boston College Master of Social Work program, not believing that anything would come from it. When I received an email a few weeks later from the program, I was prepared for another rejection. I clicked on the link and confetti filled my computer screen. A bunch of admissions officers that didn’t even really know me saw in me what I couldn’t see in myself. My dreams were finally coming true, and none of it would even be possible without recovery.

I was over the moon with joy, and in 2020, started my Master of Social Work. When I began classes, I told myself that I was going to separate myself from my personal recovery story and focus on other topics in social work. However, life has a funny way of steering us in directions that we don’t expect. One of my professors talked openly about her experiences with mental health challenges, including an eating disorder, on the very first day of class. It opened the door for us to share our own experiences, and talking about going to our own therapy appointments was completely normalized. I knew right then and there that I couldn’t, and didn’t want to, separate myself from my eating disorder history, and instead, let it shape me. One of the great things about recovery is that I can acknowledge my past, reflect on it, and take the things I learned to help other people.

Through experiences in my life and in school, I learned that I can’t truly show up for other people unless I show up for myself. Self-care is not a luxury – it is a necessity. For me, self-care looks like taking my medication, eating and hydrating regularly, going to therapy and other appointments, getting rest when I need it, and taking a million pictures of my cat doing adorable things. I cope with challenging situations by talking about them instead of holding them in. Sometimes I’ll clean, do some crocheting, or watch something funny to lift my mood.

I am so proud that I graduated a few weeks ago, and I am officially Alison Sabean, MSW! It’s been a wild ride – while completing my Masters, I moved from my childhood home, got diagnosed with endometriosis, and battled other health challenges. I also met incredible lifelong friends, learned more than I ever thought possible, got awesome opportunities, and had professors that changed my life (for the better, of course!). I have lots of ideas of things I want to do – I am eager to help make pet care more affordable and accessible, particularly for people that would benefit from an emotional support animal. I want to help implement eating disorder awareness and education programming in colleges.

Life in recovery is great, and not without its challenges. Today I am navigating chronic illnesses, including fibromyalgia, endometriosis, and GI issues. I was diagnosed with attention deficit disorder.  These conditions make life quite challenging sometimes. Living with an eating disorder on top of all this would make things even harder.

I also find it fitting that this event just so happened to fall during Pride Month. Coming out has helped me celebrate and embrace my identity, instead of trying to fit into an identity based on who I thought other people wanted me to be. When I was struggling, I attended a few Hope and Inspiration events. I told myself that, someday, it would be me up there telling my story. I am so proud of how far I’ve come. Wherever I end up, I know that I have a bright future ahead of me, thanks to recovery. Eating disorders are 24/7/365 illnesses, and recovery is a 24/7//365 possibility.

Jamie’s Story

I like to think of my eating disorder recovery story as a story about the complexity between bodies, what happens to bodies, and how we cope.

We all know that eating disorders are multifaceted. No one person or experience causes an eating disorder, and my story is no exception. I believe that my eating disorder is in part the result of extreme internal conflict and self-rejection because of the dissonance I felt between what I was and what I wanted to be in terms of gender identity and expression. I believe my eating disorder is the result of growing up in a family and environment that idolized thinness. I believe my eating disorder is the result of our cultures’ constant reinforcement of heterosexism. And, I believe my eating disorder is also the result of my body and mind’s response to trauma. As I said, it’s complex.

It took me a while to figure out at what point on the timeline I wanted to begin my story. I’m going to start my story back in 2015 when I finished grad school and was working at a hospital as a speech language pathologist. The pressures of graduate school allowed me to conceal and hide from myself what was really going on internally for me and what had been building up for years. Inside I was really struggling with an immense amount of shame, inadequacy, and unhappiness. My eating disorder and depression spiraled out of control pretty quickly and I received intensive treatment for my eating disorder for the first time. It was also the first time I was hospitalized for suicidal ideation. I was terrified and didn’t think I needed or deserved treatment. I had been living with my eating disorder on and off for almost 15 years by that time – was this something I actually needed treatment for? But I also knew that for the first time I felt relieved and hopeful that maybe I actually didn’t have to live life the way I had been living it.

If you were to ask me then, where I’d be today, it never would have been this. I spent 7 years in and out of treatment, various treatment centers and levels of care. While some professionals and parts of treatment saved my life, it’s undoubtedly true that traditional eating disorder treatment comes with its own set of problems, especially for those in marginalized communities. Recovery has felt gruesome at times with the numerous slips and relapses. I’ve struggled with periods of hopelessness and suffered from not believing I had the confidence and ability to actually be someone who recovers. But now I know that the brief glimpses of recovery I experienced throughout that time can become a long term reality, and although I don’t think I’ll ever call myself rigidly recovered, the process of recovery has been and will continue to be one of self-discovery, acceptance, and courage to do hard things.

Let’s dive in a little deeper:
I can’t really talk about my story without talking about my identity. I identify as queer and non-binary. When I first started healing, I didn’t even know what these terms meant. I was completely clueless and lacked the language to use to explain my experience. What I knew though was that I have always felt profoundly different from others and uncomfortable in my body both physically and in relation to my gender identity.

My earliest memory of hating my body was when I was 8 years old. I was at an overnight camp and had been crying for multiple days that I was homesick. I was so upset that I didn’t have an appetite and didn’t eat. The attention I received for not eating was coupled with positive reinforcement and attention. From a young age, I became aware of the power of restriction.

After that, from what I remember about my childhood, growing up, certain conversations around food were so commonplace that I had no idea they epitomized a toxic diet culture. Constant talk of assigning morality to food, we had a bread box in our kitchen that remained an empty accessory. I always thought it was ironic. Aesthetics were always important with my family. Within my family, both men and women were on what seemed like a life-long diet. Talk of “cheating” was never in relation to academic tests, but in reference to eating dessert. I grew to associate “cheating” with fatness which was falsely considered immoral. The word “fat” was a little word yet it carried enormous meaning in my family. Because of how differently I inherently felt from my family already because of my queerness, I remember thinking that I could not become fat because it was the only way I could control and ensure that I fit in. If I was thin, I could guarantee I would be accepted in my family.

This acceptance came with a price though, and that price was secrets. I never expressed my experience of being different, in part because I didn’t know how to, but also in part because I was ashamed and fearful of what it would mean for other people to know about my history and about my gender identity and sexuality. In middle school I started going through phases of hyper-feminizing my appearance despite it not feeling right. I wanted so badly to fit in and so I attempted to conform to a beauty standard that I felt ostracized from. In high school I can remember my eating disorder and overexercising behaviors really beginning with intention under the guise of wanting to be “healthy” which was a messy recipe with my perfectionistic tendencies. Orthorexia took a hold of me for the first time and I started the horrible see-saw, as I like to call it, between restriction and self-harm. It was an exhausting battle and led to more secrets – which became a heavy weight to carry.

For a while, because of the way eating disorders and self-injury operate, the behaviors worked. I felt more like I belonged, and more like I had a right to belong. The behaviors worked as the ultimate distraction from what I needed to explore, that being my sexuality and my identity. My eating disorder gave me the sense of power and control I needed over my body. While I was merely controlling the food I ate, I had convinced myself I was controlling experiences in my life. As a 3-sport scholar athlete, in high school, overexercising was disguised as getting in shape for the next sport season and sadly, not eating lunch was often the norm for so many of us.

In reality though, distractions only last for so long and my freshman year of college was spent in my eating disorder. Being away from home enabled my eating disorder to take over with a vengeance. I isolated from the few friends I had made, and lost touch with family and friends from high school. I had difficulty making new friends because I was always coming up with excuses for avoiding the dining hall because I was too busy calculating miles run at the gym and training for lacrosse season, which I only later had to quit because I was too sick to play. I remember passing out in my dorm room and thinking how lucky I was that none of my roommates were there because I didn’t want anyone to thwart my eating disorder’s efforts. I was not living but merely existing and in hindsight, it felt horrible.

For the rest of my college years, my eating disorder would come in waves, never lasting long enough to cause too much alarm. For a few months I would be okay and then there’d be a few months where I wasn’t. Things came crashing down again though my senior year and into my first year out of college. It began with being sexually assaulted on my college campus. This event made me lose the false sense of safety I had procured with my eating disorder guise and completely threw me. I no longer felt safe in a body I was already uncomfortable in, and I started to fear femininity even more. It was easy to blame my gender on trauma. Instead of just something that didn’t feel “right”, femininity became a threat, a source of danger. Food, which I already had a complicated relationship with, no longer filled me with nourishment, but with danger, anxiety, and uncertainty, because that’s what trauma can do.

In response, I did the only thing I knew how to do, I gripped tighter onto silence and kept the secrets of my identity I was already holding for longer. I felt so ashamed of my body and of who I was. I felt like my body was inherently wrong. I felt like since I was hurt as a child and then as an adult, surely, I must have been the problem. I had been thinking about coming out as gay my senior year of college, right around the time I was assaulted. To come out after this event though felt like it would have been self-sabotage. I knew my truth, but no one else did, and the last thing I wanted was for anyone to confuse my trauma with my liberation. The potential for anyone to associate my identity with my trauma felt more painful than holding onto the well-kept secret of my sexuality.

I ended up coming out when I was 23 years old, two years after I graduated college. It took me years longer to even talk about my trauma in therapy and even more years to confront my gender identity. It’s hard for me to describe the shift in strength I felt. While I used to find strength in restriction, I now know that strength can be found in the courage it takes to stop living the illusion of an authentic self. In fact, starving yourself is one of the most alienating experiences.

Today I’ve embraced living more authentically through self-expression like clothing, hair, and tattoos. These superficial means of self-expression enable me to feel like I’m taking command of my body via a corrective experience. My choices of haircuts over the years have served to alleviate gender dysphoria and foster radical self love.

Today I’m still working on figuring out my identity and working on ways to satisfy my gender expression and identity without my eating disorder. But I think that speaks to the fluidity of identity. I used to think that I had to have a certain body to be nonbinary, but now I know that any BODY can be nonbinary. For so many years I struggled with wanting to disappear, wanting to not be seen, but now I know that there was always a small part of me that wanted to be seen and understood for who I unapologetically am. I constantly work to allow myself to be authentic in the face of others, and that takes extraordinary vulnerability at times.

From this I’ve started to experience what it feels like to have deep connections with others, something that the eating disorder took away from me. I’ve met my partner of now almost 12 years and we have an 11 month old daughter, Harper. She has truly helped save my life and has served as my primary motivator for me in my maintaining recovery.

In my recovery I’ve learned that many of the thoughts I’ve shared with you today are stuck points, falsely held beliefs that make sense given the context and circumstance, but are really just the result of trauma. I’ve also learned that I can actually trust my intuition and not just when it comes to food. After living with an eating disorder for 20 years, I felt like I had no idea who I was and didn’t think I could trust myself, especially when it came to food. It took time, but I’m finally experiencing what it feels like to know that my body is trustworthy. While this may all sound like I’m wrapping recovery up in a nice box, I still struggle a lot with body grief – the immense sadness over recovering into a body that feels different, uncomfortable, and unknown in many ways. At times, I miss what accompanies smallness – the security, albeit false, although there is truth in the societal security one experiences as the direct result of fatphobia and weight stigma when they’re in a smaller body.

I’d like to end my story perhaps in a fitting, non-linear way, because we all know recovery isn’t linear. But I’d like to say that while the past has unfolded itself, this is really the point where my story begins.

Jasper’s Story

It can be quite rough to live in a world that does not see you for who you are, and makes you feel guilt and shame for merely existing. A world that questions your every move, your every decision, not only in what you do, but also in what you do not do. A world of comparison, a world of “all-or-nothing”, a world of binaries, of “haves” and “have-nots”.

It is even rougher when all these things are foreign to you. When you not only do not neatly fit in a box, but openly refuse to be put in one, with some being “noisier” about the refusal than others. But what if all you were raised in, all you knew your whole entire life, were those strict binaries? What if you knew, deep inside, you do not fit in the box you were forced in by your parents, your community, and the society you were raised in, but forced yourself into the box anyways, damaging yourself, but not really knowing any better?

That was me for the longest time. I was raised in a Christian household for as long as I can remember. While the religion did encourage some positive attributes, such as showing respect and compassion for others, giving to the less fortunate, and encouraging people to find something beyond themselves, there was a more negative part of the religion that I was too young to recognize at the time. Despite preaching about love and tolerance on paper, I would eventually find out that going against the beliefs imposed by the church, or even the mere questioning of beliefs, was not only discouraged, but frowned upon. Anyone who showed any opposition to the doctrine, or even curiosity towards how all the rules came to be, was bound to eventually be treated as an outcast.

I remember being very young, and internally, I felt interest in both boy’s stuff and girl’s stuff: most of the time, I liked girl’s stuff for the sake of conformity, but oftentimes, the things that appealed to boys were what genuinely appealed to me. I remember sneakily trying to watch shows like “Sonic the Hedgehog” as a kid. I know now that there was nothing wrong with liking something geared towards young boys, but at the time, it felt forbidden, and I wanted to save face from a potentially awkward conversation. I knew it was “wrong” but did not know why.
As I continued to live my childhood, that appeal I felt towards “boy stuff” only increased. I noticed the clothes my peers would wear, and I wanted a cool video game shirt so badly, but I knew what my family would feel about it. Given my family’s culture of origin, the idea of having a child who felt happier in clothes that did not match their sex assigned at birth was something scary because they were raised to believe that having a gender-nonconforming child means they did “something wrong” while parenting me. However, I was lucky that in American culture, I could “mask” my queerness for a bit longer, and “pass” as a tomboy. But that would not last for very long…

Eventually, we moved to Brazil. That was a very big cultural shift for me. Although the US did still have somewhat strict binaries when I was younger, Brazil was even more strict about gender norms. Especially as I began to live my pre-teen and teen years immersed in a culture that forced me to be girl, and that only promised to see me as a woman as I experienced changes that were completely against my will, I felt like my only option was to “grin and bear it”, even though the expectations that were put on me felt unfair and unrealistic to the way I envisioned my future. It was conflicting to call a body that betrayed me “home”. Especially considering the messages I got from the church and my father, I felt conflicted, defeated, and alienated. “You need to give me grandkids because you are a woman, and that is what women do.” “Your body is to please your husband.” “Be careful with those rainbow people. You don’t want to end up in hell like them.” I felt very grossed out not only by how my body and my being was being framed and discussed, but also how judgmental the comments about other people’s bodies and lives were. If my role models were willing to be so judgemental of people just because they refuse to live up to their ideas, what would they say of me if I happened to deviate from these ideals, even if it was in order to invest in something I believed in?

There were a lot of negative comments about bodies in the churches I went through throughout my years. I would hear a lot about the idea of the body being a “temple”, while also ironically using that as an excuse to deprive the body of what it needs. It seems like an oxymoron to me when I think about it now. Even though the goal of church was, at least to outsiders, to be a place to find a “born again” version of yourself, there was so much judgement, not only put on me, but also onto other church members. Who looked thinner, who had the nicest dress, who was “letting themselves go”… Even the sermons occasionally had jokes that, now, as a recovered individual, I notice have roots in body image insecurities, and that disrespects the plethora of bodies that exist. I found this focus on bodies, and this obsession with appearance, to be an oxymoron. The idea of assigning one’s worth to how one’s body looks, while ignoring the spirit that inhabits the body, is something I could never understand. What use is it to look “perfect” at the cost of feeling unfulfilled? Why spend so much time hurting others based on their appearance, and instead spend that time to uplift others?

When coming back to the US as a female-passing teen, things were very different than when I was here as a ten-year-old. I hid away a lot of my insecurities about a body that was betraying me, and the lack of education on how to protect myself by playing video games.

People can be very judgmental: video games served as my safe haven for as long as I can remember. My father was (and still is) against gaming as a hobby: he claims video games are “demonic”. But the environments I got to play in provided more solace than I had ever experienced- more so than the churches I was raised in! I could be whoever I wanted, create my own stories. I even explored my sexuality a bit through gaming, although I was quite hesitant of exploring relationships beyond the average “girl loves boy” archetype at that time.

However, I did get quite ridiculed by some people for my hobby, most of them from my father’s family, and the church. Plus, the concept of a “gamer girl” was something I personally did not like because it implied that what games I was into was based on my sex assigned at birth, when the reality was that even gaming could not keep me safe from the gender binary. I felt like a sort of outcast. Especially during the rocky period of my parents’ divorce, the spiraling of my father’s mental health, and his fall towards extremist religious beliefs, I felt lost. I needed to conform to my gender assigned at birth in order to have any approval from my community, and this message was sent both implicity and explicitly. I also tried to find more masculine hobbies that may “pass” under my family’s radar. For a while, exercise was a good way to spend the time that felt like forever waiting for the lawyer to get us the apartment so that my mother and I no longer had to deal with my father’s cruel words and behavior. It was a distraction and way to numb myself from the feelings I could not comprehend at the time; what I would never fathom is how what was initially a coping mechanism would quickly become a weapon against me.

Eventually, things got out of control for me. My father would make a lot of comments about my body, about the clothes I wore, about my food choices. He would unload his biases on sexuality, particularly his hatred of LGBTQ+ people, on me. I would often wait for him to leave the house, which could take hours, to go about my everyday routine. I recall a day where he was verbally abusive to me and my sister, and it was winter vacation. We ended up locking ourselves in a room until he left for work at one; I had not had anything to eat until after he left, since I knew he would judge whatever food choice I would make.

I went through a lot, and due to the culture I was raised in, I refused to ask for help. In both cultures I was raised in, my body type was one that was valued, praised, and even coveted; I didn’t “look sick”. I didn’t look like I needed help. To outsiders, we were a “perfect” family… However, we only looked good on paper; the reality was there was a lot going on. My father, a religious fanatic, was having his mental health spiral out of control. He lost a long-time job for discriminating against a gay man, and the worse part was the silence my family had on the matter, as I only truly found out about the truth about my father’s termination as an adult. My mother, who also suffered with this difficult situation, filed for a divorce, but we still had to endure a lot of abuse from my father. We were only able to move out of my father’s house six months after starting the divorce process, and even so, the culture of not talking about my father’s abusive behavior was both harmful and hurtful to me; the concept of maintaining a relationship with my father, despite his abusive behavior, did not help, either.
I felt so afraid. Despite my ED’s deadly effects on my body, it did grant me an androgynous look. I did not look feminine at all and having to “go back” to be read as a woman felt like a horrible tradeoff. However, I did not have the language to express that at the time. I did not know how to express how I felt about the incongruence I felt, especially considering how hated and taboo it was in the culture I was raised in. I also felt “turned off” by the coping mechanisms that could be healing during my recovery- most namely the video games- after hearing it being associated with so many negative things over the years.

I did not trust my medical team at the time because it was always my family calling the shots; the medical team would talk at me, but never with me. They were more concerned about what my parents wanted than what I needed, which made it difficult for me to talk about my concerns, and for them to have potentially step in to provide help to my mother and me.

The medical team only showed concern for me when I was deep in the trench, and, honestly, it felt like they merely threw me and my mother to the wolves than providing us with true assistance. They simply gave us referrals to ED clinics and sent us off to figure it out on our own. I, especially, felt betrayed, both then and now, for different reasons. Back then, I hated that they were calling the shots, I thought there was nothing “wrong”, but now, not only do I realize that I could not recognize the severity of my condition due to how entrenched the ED is, but I also could have used help much earlier, with nothing to show for it. It was especially unfair for my mother to navigate such a difficult area of healthcare all on her own, while also having to navigate her own beliefs as it applied to my recovery.

What I did not realize is that the environment I was raised in was far from a positive, uplifting one- as it often claimed it was by the religion I was raised in, and the culture I was raised in. In reality, there was a lot of judgement based on the conflict of who I felt I was vs. who they wanted me to be. Now, I needed to separate what I wanted vs. what the ED wanted.
In order to do so, separating my ED from me was helpful. I named my ED Jader. Much like my father, he is abusive, a “black-or-white” thinker, and, ultimately, wants what gives him the advantage, but frames it as if his desires are what I “want”.

During that time, I realized that, similarly to a video game, Jader was merely a dungeon master of sorts. The real “boss” was Odette, the hyperfeminine embodiment of my gender dysphoria. I did not know about Odette prior to Jader’s appearance, but she was there for a very long time, long before Jader, even. She was the one who would judge me alongside Jader. Although the two bicker and agree-to-disagree quite a lot, they both share their destructiveness in common.

After being able to flag Odette as the main villain of concern, overcoming Jader became easier. Knowing that there were terms to express my feelings about my identity was an enlightening and healing experience for me, and it helped me explain how I felt about my body, and how to provide myself with more euphoric experiences as a person who wanted to live their truth and be their authentic self. By speaking with my recovery coaches, reading LGBTQ+ books, interacting with other LGBTQ+ patients recovering and living through situations like mine, and sharing stories and experiences with other members of the LGBTQ+ community, I learned that many people have been through situations like mine, and that does not make them “less than”. Instead of feeling shame and guilt, I have learned to better understand my recovery as a part of finding myself amid a chaotic environment. There was nothing “wrong” with me owning my truth. It is my truth and my experience that have made me the man I am today. Some days were definitely better than others. As I found tools to help myself, like pronouns, a name change, binders, and affirming clothes, it felt easier to silence both Jader and Odette. The real sucker punch to Odette and Jader was finding out the boon that was top surgery- as long as I was committed to recovery, I could eventually be rid of one of a painful reminder of being in a body that was not mind, and a common taunt used both by Odette, and the binary-obsessed society we live in.

Especially after coming out to my family after treatment, things briefly got very rough. I had never imagined that the day I had my family appointment with my psychologist, all hell would break loose; at that time my mother went from “I will make you go to therapy for your ED” to “I want nothing to do with you getting gender-affirming treatment”. I felt both puzzled and betrayed. The church I was in also seemed to tag along and try to indirectly taunt me, going as far as running a “healthy identity camp” for teens of the church- simply a polished version of a conversion therapy camp. My mother also sought the church’s “healthy sexuality” camp as an attempt to “fix” me. But the reality was that I did not need to be “fixed”. I was wonderful just the way I was. After interacting with so many awesome people in the LGBTQ+ community, both online and in person, I realized my transness allowed me to be more empathetic to myself and others. Much like having a secret garden within myself that was forbidden from being accessed for the longest time, my sexuality, with all of its kinks, quirks, and queerness, was a gift for myself, and a gift to people who I determined were worthy of finding out about this special piece of myself. It was nothing to be ashamed or afraid of, and to hide it would be a disservice to myself.

I wanted to better understand my “new” self, which had really been there all along, waiting for me to take ownership of it. I slowly traded the shame and misunderstanding I had about my identity for understanding, appreciation, and, of course, pride! I looked for sex-positive and LGBTQ-positive spaces and more information on how to best defend myself after being abused by my father and experiencing threats at home based upon my gender identity. I was able to learn that there are no binaries. To have to force oneself into a binary ignores all the hues that exist in the world. We are more than black or white. I learned about consent, something nobody taught me growing up. I can create boundaries for my safety. I remember being forced to express physical affection to my father in order to “do so with my future husband”; as an inexperienced young person, I did not realize how damaging that was to me. It sent me the message that, yet again, my body is not indeed mine. Learning about consent allowed me to bring in people in my life who are constructive to my existence, my recovery, and my goals, and steer away people who may be detrimental to my life.

I eventually came to learn through my exploration of my sexuality, as well as reintroduction to hobbies with new goals and a new mindset, that my body is not an ornament or object, but rather a tool. I can choose what I want to do with it, what I want to allow it to feel and experience. If I found that something was not meant for me, I could step back, revisit it at a later time, or choose not to engage with something that is harming me at all. Finding joy and pleasure in things that interest me and make me feel comfortable or engaged is also nothing to be ashamed of, it is normal to enjoy things that I was told were “bad” growing up because what matters is whether something fits my ideals and beliefs, and not those that were dictated to me.

Of course, this process did not happen overnight. I have had rough patches, and “Odette days”. The pandemic lockdowns were yet another moment I felt like I hit an all-time low, spending a lot of time surrounded by a family that did not understand what I needed, and having no way to temporarily escape without my family having an objection against me seeking connection with other LGBTQ+ people and allies. Jader also tried to come back briefly, even if it were for a last time. I eventually found that although I could not do most of the activities I would before the pandemic, I could find new coping skills- yet again. I could volunteer and make more connections while contributing to causes I believe in. I could find awesome LGBTQ+ speakers, like Jamie Raines and Jessie Earl, to distract myself when Odette and Jader were the loudest. I could also call lifelines like The Trevor Project for help when I needed it most, despite my family’s objections. I learned to stand up for myself and advocate for my needs during the darkest times of my life.

The people in my life felt angry that I was “breaking” all their “rules”. But what they did not realize is that nobody needs to live under anybody’s restrictive “rules”. I am free to be whoever I want, to do what I want, to find what makes me feel happy and fulfilled. I can find meaning and communion amongst people who can love me for who I am, and not for what they want me to be. I can live up to my own values and principles, separate from those values and principles that are either detrimental to me, or in conflict with my beliefs. I can be completely different from the environment I was raised in, and from the roles I was assigned- and that is OK! The circumstances of your birth do not define you.

I had to find new circles to be around after leaving toxic circles that did not want anything to do with me only because I was trans. Alongside volunteering at a pantry, I found an LGBTQ+ center, and I eventually was able to form values of my own, separate from that of my family of origin, the church, and the culture I was raised in. I found out the value of community, helping others, learning how to listen, and fighting for the visibility and equality of others. I was able to let go of toxic belief systems imposed by the places I was raised in, including those associated with my ED, for beliefs that were constructive and that were based on what I wanted and what I believed in.

Quite honestly, the process of forging my own path was able to even inspire my mother. After the battles we have been together with the ED, we had drifted apart due to our conflicting beliefs, and me having to find ways to continue in recovery and finding my sense of self. I do acknowledge this was a lot to process for my mother, and this triggered a lot of different feelings that she has had to navigate over the past five years. I can understand that her anger at me was often out of fear of how others may react to her having a trans son who has recovered from an ED, especially in a world that often shows a reluctance to comprehend what it is to have a family like ours. We make mistakes, but we have learned with them over time; after dropping out of college during the pandemic due to a fear of family disapproval of my goals for the future, I eventually mustered the courage and motivation to go back. I graduated with my associate in Summer 2022, and I am predicted to graduate with a bachelor’s in health education this coming spring.

My mother has also chosen to follow in my footsteps, and has begun the process to obtain an associate degree. I have often provided her assistance, especially because English is not her native language! Surprisingly, she has recently taken a course in gender and sexuality, which has provided connection for the both of us, and opportunities for us both to think critically about our beliefs regarding gender. It often has felt like a three-legged race over the years, since we both have relied on each other so much. While we have both made mistakes over the years, we do show willingness to become better people, and to challenge ourselves every day, and having someone like my mother show willingness to better understand her son really means the world to me, even if it took a while for her to get there. According to the Family Acceptance Project, LGBTQ+ folks who have accepting family have higher self-esteem, better overall health, and more social support that LGBTQ+ folks who come from unaccepting families, which really drives the following point home: LGBTQ+ acceptance matters, and it is a way to prevent poor mental health, including EDs.

I am hoping to finally have issues off my chest this winter! I know the recovery from top surgery will suck, but I know I will have support from the ones who genuinely care about me, and who know how important this is to me. I am glad to have access to this important procedure, while many states unfortunately try to restrict procedures like mine, which can literally be lifesaving! Trans people are valid, and their ED recovery stories are a part of their journeys towards self-acceptance and self-love; unfortunately, according to The Trevor Project, 93% of transmasculine people feel dissatisfied with their bodies, and 33% of trans* men, and 35% of gender-expansive people assigned female at birth will battle an eating disorder at some point in their lives. ED care can be a part of gender-affirming care; banning gender-affirming care can jeopardize the safety of trans* patients seeking recovery from their ED. It is because of the promise and existence of top surgery that I am here today. My body has gotten me this far. I do not need to feel ashamed, or to worry about being judged, for wanting to upgrade it from an emergency shelter to a home. It may just be a body, but I can choose to decorate and renovate it as I deem fit, and that to me, is a form of self-love, and a way to push back against the belief systems that attempted to keep me captive for so long. I deserve to thrive. I can find out what I want. I can create new meaning in my life after leaving what is harming me. It is never too late to rediscover your true self. It is far from a walk in the park, but it is worth it in the end.

Shikha’s Story

Growing up I always felt like I wasn’t allowed to take up space in this world. I grew up in a larger body and felt like not only did my body take up space but so did my personality. In my head, the only solution was to shrink myself.

I remember always feeling uncomfortable in my body. I was uncomfortable being in a larger body and being Indian in a predominantly white community. I did everything I could to hide. I did not want people around me to actually figure out the size of my body and my ethnicity. I did what I could to blend in and assimilate to the culture around me.

My relationship with food as a child was fairly simple. I love food, I never feared it and thought of it as something that brought me joy. As I got older I started to get more and more comments about the size of my body and started to create that connection between food and my body size. I watched TV shows and never saw any South Asian girls and girls in larger bodies, this gave me the false understanding that I needed to be white and skinny to be considered beautiful in this society. I started becoming more cognizant of the other girls in school and engaged in comparison. These factors contributed to me developing an eating disorder but there was one moment that was the main catalyst.

I distinctly remember the moment when we were on vacation and I wanted to ride a horse. In order to ride the horse you were asked to step on a scale to make sure you are under their weight limit. They weighed me in front of everyone and said that I was too heavy to ride the horse. That was when everything changed.

I decided that I was going to work on being “healthier.” Since I was living in a larger body nobody told me this was a bad idea. Everyone cheered me on to lose weight and become a smaller version of myself. This reiterated the idea that I was taking up too much space. This led to downloading a certain app (I think you all know which one I’m talking about) and engaging in restriction. While to everyone it seemed innocent at first, eventually you could see the happiness and brightness leave my face. I became grumpy and desolate. I no longer saw food as a source of joy, but as a source of anxiety. I started to engage in unhealthy methods of exercise along with the restriction, but when I looked in the mirror I never saw any change.

After some time, the eating disorder didn’t just take over my mental health but also my physical health. I felt a deep sense of shame for what I was doing but could not bring myself to admit that I needed any help. I eventually vocalized to my parents some of the physical symptoms I noticed. I was surprised by how worried they seemed to be. I was taken to many doctors, where I was not diagnosed with an eating disorder but where the doctors told me I have been doing a great job and that they were impressed with my “dedication.” This showed blatant weight stigma within the system but also the failure of our system to give BIPOC access to treatment. After months of trying to understand what was going on with my body, I eventually was taken to an outpatient dietitian. I remember crying in the car on the way there screaming that I didn’t want to go because I knew she would tell me to do the things I was most scared of. I sat in that office and heard the words “you have an eating disorder” for the first time after years of pain. I knew this was true but I still wanted to not believe it.

Eating disorders don’t happen to people like me, I thought. Eating disorders and mental illness are just things that are simply not talked about and have a huge stigma around. Now I can see how diet culture demonizes our cultural foods, the lack of representation in media, and the constant pressure to live up to Eurocentric beauty standards, by keeping our skin light, removing facial hair, and staying small.

The beginning of my recovery journey focused on weight restoration. I did what I was told to weight restore and was never able to engage in the emotional work that comes with recovery. I was never offered or given the chance to go into a higher level of care, I honestly didn’t even know they existed at the time. The eating disorder made me feel like I was a burden to others. I decided to involve nobody except my close family in the process of my recovery. I put this extreme pressure on myself to get better so I no longer had to be a burden to others.

As we all know recovery is not linear, and I can say here that mine indeed was not linear. Throughout high school I ebbed and flowed through my recovery journey. I found myself in pseudo-recovery. I started to engage in orthorexic tendencies. This led me to feel so much guilt and shame. Looking at my parents’ faces after refusing to eat the cultural foods they had prepared, not being able to enjoy vacations with my family due to my fears of foods, not allowing myself to eat cake on my birthday are all memories that I truly wish I could get back.

During this time, I also found a love for running and wanted to run cross country and track, realizing that if I engaged in these activities there would be conditions and I wouldn’t be able to do the same things as the other girls on the team. I did not want to put any burden on my teammates which led me to not telling anyone on my team the truth behind why I had restrictions on running and not being able to participate in certain activities. I found myself feeling isolated and the urge to start working towards being “normal” again. I wanted to be able to be a part of a team and spend time with them at pasta parties, I wanted to be able to run and be nourished enough to complete the run, I wanted to live a life free from my eating disorder.

As high school came to a close and I was entering a new journey to start my undergraduate years at Michigan State University. After having struggled with an eating disorder all throughout high school, I decided the major for me was dietetics (naturally). As many freshmen do, I struggled heavily with my body image and with my relationship with food. I noticed myself slipping back into ED behaviors and wanting my body to change. While this was happening, I had been experiencing various traumatic events that would lead to me later struggling immensely with my mental health.

As I got more and more engrossed with my program and dietetics I started to realize that I had a passion for helping others struggling with eating disorders. I knew that if this was going to be my career that I first wanted to engage in emotional and body image work. I then realized the magic of therapy. I started to unpack and understand some of the complex trauma and experiences as a child that led to the development of an eating disorder. I started doing work around my body image. Through this experience I found the side of dietetics that believed in social justice, anti-diet, intuitive eating. I learned more than I could have ever imagined from doing research and following people in the field that shared the same values as me. I soon realized that dietetics was being taught in a non-eating disorder informed and in a heavily weight centric manner.

After years of struggling with an eating disorder, I worked hard to use all the brainspace I was using to create change and become an advocate for people with eating disorders and BIPOC who do not have the same access to treatment  and are constantly failed by our healthcare system. I went on podcasts, I wrote articles, I became president of our eating disorder awareness club on campus, I spoke up for what I believed in. I graduated from undergrad feeling like I had truly found my calling and that I am finally free from the eating disorder that took up years of my life.

Then I moved to Boston. A whole new city, living by myself away from my family. Months into moving to Boston I found myself developing severe anxiety and struggling with my body image. Within the first month of my graduate program I had multiple family deaths and was struggling mentally. Graduate school was fast-paced and was a hard transition after living in a covid world for years. I found myself losing the passion I worked so hard for in undergrad. I couldn’t find the fire that fueled my passion. As I continued through graduate school I noticed myself not feeling seen or heard. I felt as if something was missing and while I still was sure that I wanted to work within eating disorders, I found myself questioning whether or not nutrition was the right path for me.

This was the start of the hardest year of my life. I was struggling immensely with my mental health and was terrified of falling back into the eating disorder. I ended up leaving the career that I had been working towards for the last five years after being told I was not resilient enough to be in my program. I worked immensely and tirelessly with disability services to stay in my program with no real outcome. I then in December 2022 attempted to take my own life.

This experience was one of the scariest moments of my life and also a time of reflection of how far I have come. I realized how important it is to have people in your life that support you and care for you. I realized that I wanted to find my passion again. I realized that I am not too much and that I am not weak for struggling with my mental health.

Now after months of reflection and lots of therapy, I am able to look back at the hardest year of my life and thank food. Not only for helping my body do amazing things but for being a source of joy. This year has been the hardest year of my life mentally, but I found myself not seeing food as a source of anxiety like I used to. This year I realized that I wouldn’t allow my profession or people, make me feel like I wasn’t allowed to take up space in this world. This year reminded me of how thankful I am for recovery & for the people in my life who were there for me every step of the way.

At the end of this, I want people to know that you absolutely are allowed to take up space and if you ever forget, I have it tattooed on my arm right here.

Lucie’s Story

My name is Lucie, and I am a certified Eating Disorder Recovery Coach, a master’s in counseling student at Northeastern University, and the authors of The Jots of Becoming which talks about my process recovering from an Eating Disorder myself. Through my roles in the recovery community, I have had the opportunity to look back at my recovery process and thinking about the very abstract question “how did I get here?” Meaning, how did I get to a life that sometimes feels so free of the Eating Disorder when there was a point when I thought even recovery did not exist. Even though I have been recovered for three years, I look back in awe at the process. Especially now that I live in Boston, I remember sitting in treatment not even being able to imagine life without an Eating Disorder. Now, my life feels better than I could have even imagined.

And that is because recovery broke me out of the walls that my Eating Disorder confined me in. When thinking about my Eating Disorder, the first thing that comes to mind is how strong of a hold it had on me and confined me to this small life. It affected every facet of my life. It affected my relationships and made every activity and every interaction feel like it was an emergency or like it was life or death. Everything felt maximized like the decision between one sauce or another or where to go shopping felt like the end of the world and would consume my entire day.

When I described the endless suffering and life’s bleakness while struggling with an Eating Disorder would often say “why can’t you just eat?” “Just stop thinking and do it.”  That if I got myself into this, I could get myself out of this.  And it’s not that simple because the Eating Disorder served a purpose in my life. It came in and filled a hole of chaos and temporarily brought peace. It cleared the storm and helped me believe I could not live without it.  However, that can only last so long. Something I that temporarily quieted the noise in my mind caused a blaring echo that I then had to succumb to silencing.

I was always an “anxious kid.” I worried about everything from thunderstorms, to the possibility of the house catching firing, and feeling obligated to keep the peace in my relationships and life around me.  My anxiety would get so high, I would feel sick.  I connected that if I did not eat when I was anxious, I would not throw up and I could not give up the anxiety because in the brain of a young child, it kept the things from happening. From there, the seeds were planted to develop an Eating Disorder because I had the perfect storm. I had the perfectionistic tendencies, unmedicated ADHD, trauma from dysfunctional family dynamics, and several members of my family had an Eating Disorder. I heard my mom talk about her weight changes and often heard discussions of who had lost weight and how it was “progress” at family reunions and what the latest diet was. After I got a Wii fit, I was very aware of my body size and the way the numbers change. I had access to a game in the center of my living room floor that could tell me the direction. I started fixating on it more and more. It veered towards an Eating Disorder when I started a gifted program for middle school. My anxiety rose and I felt inadequate compared to my peers. After being complimented during winter break by my family on how much better I looked, I felt like it was a good thing. I affirmed to myself I was successful.  Why they were praising an eleven-year old’s weight is astonishing to me now, especially after working at a summer camp and becoming a professional in this field yet not surprising given the latest pediatric policies.

I started running a year later to see if it would help my anxiety. I found comfort in seeing the numbers on the treadmill and watching my progress. At first, my body image improved, and I felt more comfortable around eating. I thought maybe I had found my answer. However, I felt no matter how much I did, and it was not enough. That maybe someday I would feel comfortable, but I was not there yet. Then, I went on to run cross country and track my freshman year of high school.  It definitely helped ease the transition to high school because I had an automatic group of friends and a community from summer training. It gave me structure, a friend group, and I thought I needed it to feel confident and good about my body. I associated having a smaller body with confidence and that if I kept doing what I was doing, someday I could feel the peace with food I saw other people feel.  After all that time of inadequately nourishing my body and then introducing intense exertion, my body had it. October of freshman year, I passed out in gym class and hit my head resulting in a concussion. At that point I was diagnosed with an Eating Disorder. I had to take several weeks off running and due to the anxiety of gaining weight without running, I spiraled. Due to living in a small town without many Eating Disorder resources and my family’s beliefs on mental health that I should have been able to get it together, there were small points of intervention, yet nothing for long-term help. I mainly just existed in that spiraling state with small points of trying to get better for that track race or to stay in school. Every time it got harder to pick myself up because I thought I was “doing fine” and it was pointless. I do not think so many without Eating Disorders realize this is not something people “get over” and how much work it takes people to pick themselves up again. It does not matter if they’re a smart or capable in other areas in their life, just eating is not enough as recovery requires consistent nourishment through support and food.

 

At the beginning of my sophomore year of high school, I had to leave cross country and track.  I started struggling with depression because I lost a community of support and thought I would have an Eating Disorder for the rest of my life. I had tried to pick myself up over and over again by myself and I was tired. It felt too strong. My depression and Eating Disorder got worse and I admitted to Eating Disorder treatment. I started recovery when I was there and recovered medically. It was hard to be there and away from school as I was aware of the work piling up and wanted to get back as quickly as I could I returned to the same town with no Eating Disorder treatment and these were the days before telehealth.  After returning to my high school, things never felt the same as it was.  I was forced to eat my lunch in a teacher’s classroom, and I had gone through this life altering experience of treatment and hours of therapy and what it was like to be in a setting like that and it felt isolating knowing my peers could not understand. I did not really know what to say about where I was as the first thing people asked is how could I take so much time off knowing the make-up work that would be waiting. The large sums of work were my fault because I should have just gotten it together and came back sooner, especially during the month of AP exams. I found myself missing my treatment friends because I felt they could understand in ways they never could. Not explaining the whole story made me feel like I was on the outside, but I also felt elusive and cool, like I had this other life. Unsurprisingly, I relapsed. spent the next year trying to pretend that I was recovered and that because I went to treatment I was “cured.” I thought if I could just eat enough to stay in school and be able to go to the football games and the school dances and keep up my grades, that that’s what recovery was and that I had made it. Looking back, I know this was not recovery and my Eating Disorder reared its head just as much and that it just was laced with a strong dose of denial. It could keep convincing me that medically I was not where it was, and I continued to stay in a state of isolation. I was thankful I was not in complete isolation. The teacher who watched me eat lunch in her classroom and my junior year psychology teacher were supportive and always checked in with me at school and let me know I was never alone. They were there for me to talk to and urged me to continue trying to nourish my body at lunch and made sure I knew their classroom was a safe space. And they helped me realize I needed more help.  When I went to the doctor for a checkup at eighteen, which was almost two years later from discharging from treatment, she gave me the name of an Eating Disorder dietitian in my area. After some self-advocating, I started working with her. It was amazing to receive support and structure from a professional in a way I had never received before.

I only worked with her for a few weeks in-person before working as a counselor at a Jewish overnight camp. I felt a sense of community that I had never felt before and loved it. I got a taste of what life could be like without an Eating Disorder. I saw all these people who were having the s’mores on Shabbat and participating fully, and I wanted that. I started participating more. This was the first time I wanted recovery. I did not know thought what recovery really meant and this was not something I could just do on my own. I had medical problems and felt lost when it came to adding variety.  I thought since I felt worse, maybe this was not for me.  I was sent home early, which crushed me yet left an impact. I realized for the first time that this is not something that I could live with for the rest of my life and functional Eating Disorders do not exist.  I realized that in order to return to a place with people I loved, I had to work towards recovery.  After being sent home, I was home for a bit and attempted to recover. However, at the end of the month, I started college six hours away. I was excited as I had been looking forward to that for a long time. I had a treatment team, yet I convinced myself the college environment would motivate me to stay at a certain point and that recovery was not for me.  I thought if I coasted at a place where I could live with an Eating Disorder and just do enough to stay in college, yet even that was a struggle because Eating Disorders do not negotiate. I enjoyed the other parts of my college, such as Hillel and friends, and I wanted to hold onto that. Unfortunately, I had to take a medical leave and entered residential treatment. I spent the next year in and out of treatment. I would do inpatient or residential, then step down to PHP and spiral, then step back up again.

I started truly wanting recovery when I realized my narrative was defined by only my Eating Disorder. Prior to my last residential stay, I had been labeled as the “non-compliant,” “chronic,” “waste of a bed” client. I remember one night listening to “Burning Gold” and the song switched by saying “I wish the wind would carry a change” to the chorus proclaiming “I’ve had enough” and ending the song with “I am the wind that’s carrying change.” I realized the Eating Disorder was harming me more than helping me and it was not working. I was in the same place again and again and I realized I wanted to write a new narrative and that meant doing something different. The last time in residential treatment, I allowed myself to sit with the discomfort, advocate for my needs, and participate actively in treatment. I met a friend who viewed recovery as something exciting and inspired me to feel prouder of the work I was doing. This connection, from making breakfast everyday together to long conversations, was pivotal to my recovery and I am forever grateful for it.

Recovery changed my narrative. Slowly but surely, the pages turned, and I became a protagonist I thought was worth fighting for. Yes, I was gaining weight and that scared me, yet I was so relieved I was finally gaining the ability to laugh, to feel excited about a meal, and to connect with friends on more than just the Eating Disorder. I remember talking to a friend one night and thinking this feels so good, I can’t lose this. After discharging, I vowed that I would not go back to the Eating Disorder, no matter how hard things got. So, it would mean something to me, it was written in the format of the Grey’s Anatomy post-it from Season 6.  The original post-it promised “to love each other even when we hate each other. No running. Take care even when old and senile and smelly. And this is forever.”

I changed it to “I promise to nourish my body even when I don’t love it no stopping and this is forever”

My therapist in residential helped me advocate for a full treatment team, including a recovery coach. I continued to write new pages of my life while changing the narrative around elements of things I enjoyed in my Eating Disorder. I discovered new food I enjoyed and created an identity for myself that did not revolve around the way I ate or moved, the size of my body, or my illness. I formed authentic friendships and got to know my friends better and discuss more fulfilling things other than my treatment.  I returned to the summer camp and emerged as a leader and it became a place of growth and joy and see my Jewish identity in a different way. Working there made me want to include that as part of my work. Additionally, I returned to college and finally started to enjoy learning again for the sake of learning.  Since I loved psychology, I decided to pursue a career in counseling because I realized how many ideas I had related to Eating Disorder treatment and I wanted to contribute to this field. I wanted to learn as much as I could. I enjoyed connecting with individuals who were struggling over Instagram, but I wanted to contribute in a more structured way. I decided to enroll in Carolyn Costin’s ED recovery coaching program

 

During recovery, I felt the hardest feelings I felt in my life and had to challenge core beliefs I held about myself as well as relationships and started to work on trauma work.  The perfect storm leading up to my Eating Disorder was rooted in my mental health history and I wanted to continue to work on it so my Eating Disorder would not have a chance at ever returning.  Recovering from an Eating Disorder taught me that growth is not an endpoint. There is no such thing as “fully healed.” As a human, I will always have areas of growth. Recovering from an Eating Disorder taught me though that change is really possible. It is possible to learn to think differently and approach situations in a more helpful way to me and not just have a good relationship with food and my body but cultivate a meaningful relationship with myself.  Eating Disorder recovery taught me that healing requires feeling a lot and sometimes it brings up difficult memories or reveals parts that I did not want to face but facing is always better than not facing and that I could tolerate difficult feelings. Over time, I have forged connections with others and myself that will last a lifetime.

 

In recovery, I literally started to write my narrative.  I started journaling because it created the tangibility for my feelings I desired instead of using my body as communication through my Eating Disorder. I found it to be helpful in asking for things I needed and articulating thoughts outs that I did not have the confidence to say out loud.  I started publishing my writing after I discharged from treatment. I discharged around Yom Kippur, which is a Jewish fasting holiday. I wanted to commemorate it in a meaningful way that honored my recovery. As it is a holiday about starting over and apologizing, I write a letter apologizing to loved ones, my body, and myself for actions because of my Eating Disorder. I read it to my therapist, and she said, “It’s so good, you could publish it.” I sent it into Project HEAL’S blog and then I started writing as a hobby and submitting my work for publication on different blogs. Writing helped me connect with my feelings and explore a creative side and got me back into reading, which was a passion pre-ED. I was writing so much that I did not want to wait for it to be published. I started posting on Instagram, which at this time was just friends and some family. I never expected it to become a community and a guide to my career. It inspired me to publish a book because I had so much writing and I wanted to compile it. I used to think my history with an Eating Disorder was something to be ashamed of because I thought, as I had been told, it was my fault, and I did this to myself.  Over time, I worked to start showing myself to same compassion I show to others and connecting with a greater community mattered more than I how I appeared. Now, I view my story as something I carry with me and inspired to me to contribute to a field that is so misunderstood by the public.

I am frequently told, especially by my family, that isn’t it great that I recovered because it gave me a career and opportunities. And yes. It is great that I recovered. Even if I had not pursued speaking or a career in counseling, I can confidently state that I would wake up each morning and still be grateful I recovered. Feeling the freedom when I go out to eat with my friends or I go about my day after trying on a pair of jeans is there. In my eating disorder, I liked this quote from “The Boy who was Raised as a Dog” “People prefer the certain misery rather than the misery of uncertainty.” Stepping into this misery of uncertainty, although was the most daunting, emotion-wrenching experience of my life shattered me so I could put myself back together in a way I could not imagine. I was no longer held together by tape and glue but learned to stand on my own two feet and live independently in a life where I can continue to keep growing in a human way, not in a way that has to do with my Eating Disorder anymore.

I want to end by saying that recovery is not one big step. It is a series of incremental steps and the ones you do not expect to change your life are the ones that mean the most. A teacher who showed compassion to me when I needed it inspired me to pursue psychology. A summer job becomes the reason to recover when I could not think of another reason. A phone call to someone you don’t know well becomes a life-changing connection. A Spotify shuffle inspires you to start fighting. Sending in an article becomes a book. A struggle with an illness I never thought I would survive became the focal point of my career. I am grateful I never stopped fighting to end up here. To those of you who are watching and are struggling, I believe you can get there too.

And yes, show appreciation for your loved ones on your recovery journey; and most importantly, remember to thank yourself. Remember to thank yourself for all the times you said no when the Eating Disorder promised, just one more time. Remember all the times you kept eating through the meal even if you were crying and you really just wanted to stop. For all the times you chose what you wanted to on the menu. It is not as simple as recovery being all on you, yet you are your own hero in your recovery journey and the person who makes it happen. Support is crucial and so are you.

With that, thank you MEDA for providing me this opportunity to share my story.