After sharing Shira’s horrific eating disorder treatment experience, we received countless messages, emails, and tweets that made one fact abundantly clear: Shira’s experience is the norm in recovery, not the exception.
So many of you shared your own horror stories. The scope of this is hard to capture in words.
Putting it bluntly: Eating disorder recovery centers are failing their patients in larger bodies. And their inability to treat patients of size has done immense harm on a scale that just can’t be understated.
Many of you asked, “What can we do? I backed the GoFundMe, but how do we fix this for everyone else?” I asked myself the same thing.
The long game, obviously, is dismantling fatphobia wherever it exists. But there are people in treatment right now who need support. So, with the input of Shira and some fabulous babes in recovery, I created this printable letter that patients of size can give to their providers.
Explaining what shouldn’t have to be explained is painful. It’s traumatic to have to outline the most basic information just to secure dignity in treatment.
If having this letter handy eases that burden, and educates providers along the way, I’m hoping it’s a step in the right direction.
While this doesn’t dismantle systemic fatphobia, it does offer an advocacy tool for this immediate moment. The most important thing was just getting this resource out into the world for anyone who needs it — which unfortunately was far, far too many of you.
I hope that this can help ease the unfair burden that folks are facing in treatment. You deserve the very best in recovery.
Please know that I won’t stop fighting for that until it’s a guarantee.
Allies and especially providers: If you appreciate the resource and have the ability to do so, please donate to Shira’s GoFundMe for treatment, and share among your networks.
This is admittedly a long blog post, and a triggering one at that. For those of you who would like to help Shira but can’t read this post, please check out the fundraiser we started for her.
When Shira and I first connected, I had a feeling in my gut that we were meant to cross paths.
She had read my article on how I used body positivity to avoid confronting my years-long battle with anorexia nervosa, and we clicked immediately.
As a fellow blogger and advocate, no one could come closer to understanding how I felt than Shira did. (Not to mention, her winning combination of New York attitude and snark, and love of all things sparkly, captured my heart immediately.)
While her organs were literally shutting down, and a terrifying fall left her badly concussed and her nose broken, she existed in a private hell that few knew about. The outside world only knew Shira as the same beam of sunshine and powerful advocate for body liberation she’d always been. But in private, Shira was dying.
In those earlier days of my recovery, Shira was a lifeline to me. To be honest, she still is.
Because even in the depths of anguish, Shira has the biggest heart of anyone I know. No matter how far down she’s fallen, she is a relentless cheerleader for those that she cares about, and the thousands of followers who have been inspired by her journey.
That’s because as a therapist, as a blogger, and as a friend, her sincere belief is that no one — not one single person — gets left behind.
Shira fought tooth and nail for four months in residential treatment, making enormous strides.
And while she was there, in a moment of extraordinary courage, Shira revealed to the world her 20-year-long battle with an eating disorder — putting her reputation as a therapist and advocate on the line to tell an undeniably powerful truth about the reality of eating disorders.
She wanted to affirm that, yes, eating disorders are a mental illness that doesn’t discriminate, even among healing professionals.
And even those who know everything there is to know about an eating disorder, about body positivity, about health at every size? Can still suffer from these relentless illnesses.
Her bravery in that moment has stuck with me every day in my recovery since then.
Throughout this past year, over texts and calls and audio messages on the train, we took on our eating disorders together. I watched Shira fight her way from the brink of death in a residential facility for four months, in awe of the grit and determination she showed up with day after day.
On the days when I didn’t want to keep going, she’d somehow telepathically sense it, I swear, because it would be less than five minutes later that I’d get a text asking, “What’s for lunch?”
After she was medically stable and eating consistently, it was time to transition to a partial hospitalization program back home, which would help ease her back into her daily life. We were both hopeful that she was well on her way to the recovery she so deserved.
Miraculously, she was able to secure a full scholarship for PHP, as insurance providers seldom cover eating disorder treatment. We were elated and hopeful.
I want to be able to tell you that, once in program, the momentum continued. But this is not that story. That program nearly destroyed her.
I don’t say that as an exaggeration. I say that as someone who listened helplessly on the other end of the phone, filled with rage, shock, and horror at everything my friend had to endure.
As an advocate, I’m not unfamiliar with the mental health care system and its horrors. As a survivor, I have stories of my own. But despite that knowledge and experience, what happened to Shira shook me to my core.
From day one, the first text I got from Shira about her new treatment team told me everything I need to know about the place: “They mocked Health at Every Size and the fact that I’m a therapist.”
My blood went cold. “Wait, what?” I typed back.
“Yeah,” she replied. “My case manager said, ‘Health at Every Size therapist? How does THAT work?’ And then when I tried to explain, she said, ‘Well, you seem to have ALL the answers.’”
But a snide comment from a case manager was just the tip of the iceberg. Things were about to get much, much worse.
The day program Shira was a part of had a “three strike” rule as part of a contract they require patients to sign.
In her gut, Shira knew that a strike system would bring out perfectionistic tendencies (a fear of failure is super common in folks with eating disorders). She voiced that, in the past, this sense of shame had sabotaged her recovery efforts.
Her concerns were brushed aside. They insisted that their “three strike” rule helps them determine if someone needs a higher level of care, and that these “boundaries” were an important part of the care they provided.
This became a pattern, though: Whenever Shira tried to voice that something wasn’t working, she was told that her “malnourishment” and her eating disorder’s “tendency to manipulate” made her an unreliable advocate for herself.
This part, of course, comes as no surprise to me. Clinicians often treat people with mental illnesses as if they aren’t competent enough to vocalize their needs and expectations.
But the strike rule would become a sticking point, because within one month, Shira — despite all of her success in her four months of residential care — would accrue all three of her allotted strikes.
The first strike happened when she refused to eat ice cream. She did so not because she was unwilling to eat it, but because of the instructions her dietician gave her cohort.
“The dietician said, ‘You three get two scoops of ice cream.’ She then looked at me and said, ‘You’ll get a kiddie scoop.’”
Some of you won’t understand the gravity of that comment. To be clear, a dietician told a patient with anorexia nervosa to eat less food than her peers, because she is a patient in a larger body.
The message here being, of course, that Shira needed to eat a child-sized portion of ice cream, because she wasn’t thin enough to “safely” consume more than that.
This plays directly into the eating disorder’s conviction that she needed to tightly control her food intake and her body. Her peers could eat a “normal” amount of ice cream. But she couldn’t and was singled out, because something was “wrong” with her body.
“This was the message I received my entire damn life,” Shira told me. “That I couldn’t eat like everyone else.”
This dietician perpetuated a fear of food and implicitly encouraged restriction, all of which are absolutely inappropriate to suggest to someone with anorexia nervosa, regardless of size.
Restriction is never an appropriate recommendation for someone with an eating disorder.
And yet that’s what she was told… in a prestigious treatment center.
Shira refused to eat the ice cream, grappling with an immense amount of shame, self-loathing, and fear. And by refusing to eat the ice cream, Shira earned her first strike.
This became an ongoing problem in treatment, in which she was told, for example, to eat 70% of her sandwich (yes, seriously). It left her feeling guilty about eating, and when she was still hungry afterward, she wondered if something was wrong with her.
Even after the center agreed to stop controlling her food intake with numbers, the damage had already been done — she knew she only “needed” to eat a percentage of what she was given, both from what she was told and what she overheard when other patients were given their food.
She began to backslide in her recovery.
Prescribing restriction for larger patients, though, wasn’t the worst part. It was the silencing of Shira’s voice, particularly around size inclusion.
Whenever Shira tried to address the complexities of recovering in a larger body, she was shut down by clinicians and peers alike.
She was discouraged from discussing her fears around returning to a bigger body, as someone who had lived in one most of her life, and understood that her recovered body would likely be a fat one.
“I needed them to acknowledge, just ACKNOWLEDGE, that recovering in a fat body is terrifying in a world that hates fat people,” she texted me once.
Instead, she said, they remarked that she needed to “take her therapist hat off” and suggested that she was being difficult, and lacked commitment to her own recovery.
Being surrounded by a treatment team that couldn’t validate her fears, suggested that she restrict her intake, and questioned her investment in recovery, began to erode her sense of faith that she was supported.
Shira accumulated two more strikes as she continued to struggle. And rather than ask how they could better show up for her, they called her in for a meeting, and immediately blamed her for not progressing quickly enough.
That’s when they told Shira she needed to start calling residential centers, and ‘prove’ that she wanted to recover.
I remember how she described the heartbreak, realizing that her treatment team didn’t at all honor how hard she had been working, nor did they hear her when she explained how she needed the space to talk about recovery in a larger body.
She felt defeated, wondering if she had failed. Calling her outside providers, the feedback from her external therapist and dietician was unanimous: Shira didn’t need to go back to residential. She needed trauma-informed, size-conscious care at the outpatient level.
Having accrued three strikes, though, the contract dictated that Shira couldn’t continue in their program.
Shira didn’t want to give up. After meeting with her therapist, she sent a powerful email to her treatment team at the center, explaining that she would like to come back.
She reiterated her commitment to her own recovery, expressing that she simply wanted a care team that could affirm her experiences of fatphobia in the outside world, and one that could create an environment that had more consciousness around what might trigger someone in a larger, recovering body.
After sending that email, she heard nothing for two days. Wracked with guilt and self-blame, she relapsed — hard.
How could she not? In their last meeting, she was blamed for being unable to “comply” with treatment, and was told over and over again that her “manipulative” eating disorder was making it difficult — if not impossible — to help her.
When she finally heard back, she was invited to meet with her treatment team again… one week from then. Mind you, Shira’s outside providers have been contacting the center, warning them of the relapse and acute state that Shira is in.
This is the same center that told her that she needed to come to their center within an hour of her plane landing, for fear of being left with any lapse in care. Now, they’ve told her to wait an additional week to “discuss” the future of her care.
When Shira asked what she should do to keep herself safe in the meantime, the answer was short. “You left,” they told her, not acknowledging that the contract they had her sign meant she was being kicked out.
She was told to rely on her outside providers, suggesting that maybe they could’ve come up with an alternative if she hadn’t left.
Once again, the buck was passed.
Shira spent that entire week unable to afford much care from outside providers and, in an acute relapse, she unraveled quickly.
She and I held out hope, though. After all, why have a meeting at all if not to discuss how they could help her? I had read the email Shira sent, and it was gracious and encouraging, emphasizing that she was hopeful that they could find a path forward.
Clearly they were going to regroup and find a way to support her, I thought. Her email was so reasonable, and it was a powerful moment of self-advocacy for someone who struggled to find her voice.
But I thought wrong. After a week-and-a-half without care, now navigating a dangerous relapse brought on by her traumatic treatment experience, Shira attended a “meeting” with the center.
I put “meeting” in quotation marks, because it wasn’t a meeting at all. They, instead, took it as an opportunity to reiterate her failures under their care.
They told her that they would be discharging her and revoking her scholarship. Their rationale? She was ‘non-compliant.’
They went on to tell her that it was a “slap in the face” that, after being given a scholarship, she wasn’t trying harder. Shira listened, heartbroken and in shock, as she was told that she was to blame for her treatment being unsuccessful.
They would not be helping her secure care elsewhere. They called her into a meeting to simply tell her she had failed.
They knowingly allowed Shira to relapse for a week-and-a-half with a deadly mental illness, and kept her in limbo with no intention of helping her, for what reason, exactly?
They could’ve told her from the beginning that she needed to arrange for some other form of care. They could’ve offered some kind of contingency support to transition out of their care. They, at the very least, could’ve called her on the phone earlier rather than have her wait.
“She’s in a bad way,” one of her outside providers warned them that week, impressing upon them the dire stakes. During that week, Shira was fainting, and again at risk for serious esophageal injuries due to her purging behavior, which had reemerged fiercely during the relapse as she struggled to cope.
No one can know for certain why a clinical team would deliberately string someone along in an acute crisis in that way.
Only they can answer to that.
That’s where we find ourselves now: Shira was abandoned by her day treatment team, and she cannot afford another program.
Furious doesn’t even begin to describe how I feel, watching this all unfold from a distance.
Shira is dying — there’s no other way to describe what happens to our bodies in these states of ED relapse. And the hope she once carried for a life on the other side of this was pummeled by clinicians she had trusted to support her.
But somehow, she still wants recovery. After everything that’s happened, she still wants to fight. Not that I’m surprised, because Shira already sacrificed so much to get to where she is.
But after everything she’s endured, both at that center and others, I wouldn’t have blamed her at all if she’d given up.
And this is the part where I get extremely, uncomfortably honest with you all: I don’t want to lose Shira. I can’t lose Shira.
This is the first fundraiser like this that I’ve ever been a part of, and believe me, I wouldn’t be asking if this weren’t important to me.
I believe that the advocacy and clinical work that Shira does is invaluable, and it’s work I want to continue doing alongside her. I want to believe that those of us with mental illnesses can recover, and go on to help others — as healers, as writers, and YES, as therapists.
I want Shira to continue to be a shining example of what happens when those of us who are wounded go on to become healers.
But Shira needs help — desperately. And somewhat selfishly, I don’t want to do this whole recovery thing without her.
I want us both to get better. I want us to start our own treatment center one day (I’ll admit, Shira is making me seriously consider becoming a therapist myself), to fight for policies that protect people like us, and hold accountable any and all clinicians who do harm to their patients.
I have already watched so many of my friends die, fighting to the very end to access care. I don’t know how many more people I can lose this way.
I know you probably see hundreds of GoFundMes every week, floating across your screen. And I won’t try to convince you they aren’t all worthy of your support.
But this one, for me, is personal. Because of everything Shira represents, but more than that, because of everything she’s done to pull me out from the depths of my anorexia, even as she struggled with her own.
I don’t want a fatphobic, negligent system to be the reason her precious light leaves this world. I don’t want Shira to become a statistic, exemplary of all the ways this system fails so many of us.
She deserves to live. She deserves compassionate, trauma-informed care. We all do.
And she still has a chance — and all she wants is to recover, so she can dedicate her life to helping others do the same.
To learn more about the fundraising effort and Shira’s amazing work, take a look at the GoFundMe I helped create.
And if nothing else, I want to make one thing crystal clear: Neither of us are going down without a fight.
Because no one, especially at their most vulnerable moment, should have to go through what Shira has. And we both want to keep fighting to change that.
When we entered into this world, I can’t imagine that we feared becoming more. Back then, the moon was full and the world was fuller; the majesty of being small was only in relation to everything that was still unknown.
We had not yet been told to fear hunger. We knew hunger in the way we know our names — you always answer to it.
Body, this is my olive branch to you.
/
I was 27 years old when “anorexia nervosa” appeared on my medical chart. In a quiet moment, staring at a flickering screen, I listened to my breath empty out of my body, a mix of relief and petrification.
Someone named what I could not: I was hungry.
The kind of hunger that moves in like an eclipse, enveloping your whole world in empty shadows. The kind of hunger you invite because staying small, in a cocoon or a corset of your own painful design, feels safer than stepping into the fullness of your life.
Your stubbornness and mine, colliding day after day. I ask you to die; you demand to live. I ask you to diminish yourself; you hold the line. I ask you to hide; you remain tangible. I am angry at every headache, every dizzy spell, every time I nearly fell down on the train. I am angry that you keep me tethered here.
I mistook your refusal to allow me to starve as a weakness, but I’m breathless now, looking back at all the ways you would not back down from survival. All the times you revolted, sounding every alarm, as if by sheer force of will we might find the urge again to live.
Body, I am in awe of you.
/
You are daring and spectacular. You’ve shrieked in defiance of every label you couldn’t hold. You held the truth of “boy” before I could feel it for myself. You were uncompromising in the truth of what you carried, chest open on an operating table, with a river of bright red blood exposed by two perfect incisions.
The truth of the body, you whispered, runs deeper than the mind. When I woke up, shrouded in the fog of anesthesia, I felt us move closer — like two pieces of a puzzle, surrendering to each other — and I was not afraid. The shape was new and the picture was clearer.
The bottom of the glass, the bowl, the bottle was not enough to dissuade you from being. When I hid, you followed; when I silenced you, you boomed and bellowed like thunder. I am still here, you sighed. You would not disappear. You would not dim.
Body, you are a vision.
/
When I began to eat again, I could feel you coming back to life. The noise was ecstatic and overwhelming. Sometimes I raged with so much hunger, it scared me. It was the first time I knew myself as an animal first, above all else.
Somewhere along the way, I’d forgotten that you needed me, that I needed you, that we were bound to each other. You were so patient still. You promised me a home when I had nowhere else to go. You promised me a vessel for the adventure of a lifetime. You were the light that drew me back, like a moth continually pulled from the darkness again, and again, and again.
Sitting in the dark with me, you waited. A lighthouse on the cove, a flare popping open in the sky, a smoke signal spiraling — every pang of hunger, every shaky hand, every heart palpitation and terror a subtlety that said, “More than this, Sam, we need more.”
Body, your courage stuns me.
/
I realized I was truly starving when I couldn’t shake the tunnel vision. Had the walls around us been any smaller, it might have become a casket. Back then, the world was a single dimension, an endless stream of self-imposed calculations. They were abstractions I used to comfort myself, to convince myself that I’d done good.
I will be exactly enough, I told you.
For the boys who couldn’t love me, the parents who couldn’t understand me, the world that couldn’t see me. I will make myself so small and inconsequential, I’ll be as harmless as the fly that sits on the windowsill. I will be the closest thing I can to being nothing, because to be nothing means that I will never take up more space than I deserved, more love than I’d earned.
But you refused. You kept the lights on. I shattered every lantern; you reassembled the pieces.
And stubbornly, you survived, so that I might one day understand that worthiness is not awarded like a ribbon at the spelling bee.
There is space here. There is love here. And both are the gifts of being.
Body, teach me.
/
I am learning to love you back. I pause to feel the spaciousness between each breath.
“Marvel at this,” you remind me, eyes fixed on the horizon. “Let me show you.” One bite at a time, you restore me. The warmth returns to my belly. The sweetness to my laugh. The glow to my cheeks.
I will not pretend that I’m not afraid. There are days when I will be withholding. Being alive is a tremendous responsibility, and every so often, it scares the hell out of me.
To be a breathing, feeling, trembling animal is something none of us are prepared for. We enter this world screeching and gasping and blue, and spend a lifetime learning to breathe our way through it.
But I will not abandon you. I will come back, again and again, as many times as it takes to live.
That is what I can promise you.
I’ve teased apart the taste of honey when drinking my tea. I’ve let raspberries slowly dissolve on my tongue; I’ve savored every bite of a sponge cake flavored with cardamom and pistachio, so decadent you wouldn’t trade it for anything.
I’ve learned to cherish the warmth of someone’s chest against mine, the ephemeral magic of a song so loud it reverberates inside me, and the ripeness of a pea-pod from a stranger’s spring garden, sliced open between my teeth.
When you speak to me, the cadence has become familiar — I need, I want, I am, we are. Together, we move with clumsy but purposeful choreography.
And I know now to hold the gratitude for where you’ve carried me. I know that you are not an anchor, but rather, an altar. You house everything that is sacred in me.
Body, you are a blessing.
This blog post was sponsored by Eating Recovery Center in honor of this year’s Eating Recovery Day on May 7th! The theme, #MyRecoveryLetter, is an open invitation to reflect gratefully on what has helped us in recovery. I invite every one of you to share your own letters to whomever or whatever has helped you in your journey!
Struggling with food? Body stuff? Or just need someone to talk to? The National Eating Disorder Association (NEDA) is a wonderful place to start. They’ve been an incredible resource for me — and I hope they’ll be for you as well!
Hey, before you go…
This blog is not sponsored by any fancy pants investors that are trying to sell you stuff.
Coming out of denial has been such a terrifying process. It’s like discovering that I’d fallen asleep at the wheel, and, eyes open now, I’m forced to assess the damage I can’t even remember causing.
One minute, I swear, I was on the road — the next, there are wires attached to my chest, and I’m getting an EKG and wondering how the hell I got there.
The shock comes in waves, and some triggers feel more sensitive than others. My stomach drops every time I hear my dietician say the word “refeeding.” I cringe when a doctor says “starvation.” They feel like heavy words, too grim, and the gravity hasn’t set in for me just yet.
I can’t decide what scares me more — the fact that I’m so malnourished that I have to reintroduce my body to food, as though we’re strangers to one another, or that my fear of food still, at times, outweighs my fear of destroying my own body.
How could I have fallen this far down the rabbit hole and not noticed?
I want to share what I’ve realized about my own denial, not just to get it off my chest, but because I think it speaks to the larger issue of how eating disorders are characterized.
Because as I began to unpack the reasons why I missed the signs, one thing became obvious: It’s not that I missed it.
It’s that our culture never gave me the tools to recognize an eating disorder in the first place.
1. My eating disorder wasn’t as ‘obvious’ as I thought it would be.
My eating disorder didn’t present in what I considered the “typical” way.
I wasn’t obsessively weighing myself, I wasn’t counting every calorie that I consumed, and I hated exercise. I didn’t cry if I ate a slice of pizza or have a deep-seated fear of butter. I didn’t fit the stereotype, which made the denial much easier to cling to.
Food caused me so much anxiety — the decisions involved, the binary of “good” and “bad” foods, having “too much” of something and “too little” of something else, and all the pressure of making the “right” choice.
Even with all of that anxiety, I pointed to the fact that I wasn’t trying to lose weight as “proof” I didn’t have an ED. I just wanted to stay exactly the same — which I insisted wasn’t about my body image or a fear of fat.
If I was always just a little hungry, I reasoned, I could prevent my body from ever changing. No one told me that an obsession with size, even if it’s not about getting smaller, is still an obsession rooted in a fear of fat.
Basic things like cooking or even looking in the pantry could send me spiraling. That anxiety led to cycles of restricting, in which I would eat very little, just to avoid the obsessive, overwhelming thoughts that emerged each and every time I had to make a decision around food.
It escalated, too, to the point of being unable to feed my own cats, for fear of making the “wrong choice” for them.
My partner is still solely responsible for determining what our cats eat and giving them food, because the panic I felt about their diets became too unmanageable for me.
My eating disorder also wasn’t as static as I expected. I had periods of time that I ate more, but as my life stressors increased, my restricting did, too. I thought eating disorders had to be constant and consistent, and mine wasn’t. I figured that let me off the hook, because it was “just stress.”
All of this is still dysfunctional, but in my mind, I could only picture the stereotypes that I had heard. I could eat pizza and ice cream! I could eat takeout! I wasn’t vomiting!
I was quick to point to the things that normalized my behavior, but eager to deny the things that were clearly disordered.
2. My body didn’t ‘look’ sick.
The one thing that still boggles my mind about eating disorders is that they truly have a mind of their own.
I knew, logically, that eating disorders can impact anyone of any body size. But I still denied having a problem, because the body that I saw in the mirror didn’t look emaciated.
Where was my terrifying “before” picture? And even if I tried to get help, who would believe me if I wasn’t “thin enough”?
But eating disorders don’t describe a type of body — they describe a specific relationship to food and to our bodies that causes psychological distress.
It took a long time before I was willing to accept that my body didn’t reflect whether or not I had an eating disorder; my state of mind did.
3. Everyone around me had disordered eating.
Disordered eating is everywhere. Skipping meals, weight loss resolutions, detoxes and fasts, even smoothies that replace meals are totally ubiquitous and, at times, inescapable.
When you’re immersed in diet culture, recognizing that you have an eating disorder can be impossible when everyone around you is validating your mentality, however unintentionally.
Being transgender especially, it’s normal for people to struggle with their bodies, and to push themselves to change as quickly as possible, no matter what it takes. And while gender dysphoria is a very serious struggle, I often used mine as an excuse to dig deeper into my eating disorder.
“It’s not an eating disorder,” I’d tell myself. “It’s just dysphoria.” But these aren’t mutually exclusive — in fact, this is why transgender people are at such an extraordinarily high risk for eating disorders.
How could I know that what was happening to me was dangerous if everywhere I looked, it was presented to me as normal and even desirable behavior?
4. My justifications for restricting seemed totally reasonable.
My eating disorder was really good at pointing fingers. For every disordered behavior or thought I had, I could always come up with a hundred excuses for why I engaged with food that way.
I went vegan for ethical reasons. I just hate cooking, okay? The kitchen is too messy. I’m saving money by skipping lunch. I don’t really have any food in the house. I’m a picky eater. I’m just lazy. I’m not good at meal planning. I’ve been so busy. I’m just saving room for dessert. I just prefer snacking throughout the day. I don’t need that. That doesn’t have vegetables. I’ll eat later.
I think a lot of people imagine that an eating disorder is a deliberate and conscious decision like a structured diet that spun out of control, but in reality, it’s a lot sneakier for many of us with EDs.
I didn’t wake up one morning and decide that I was going to stop eating. Rather, these little excuses that popped into my head enabled my restricting one meal at a time. And before I knew it? I had a much bigger problem.
My eating disorder wore down my defenses a little bit at a time — look how much creamer I put in my coffee! That’s practically breakfast! — which allowed it to escalate in an insidious, practically unrecognizable way.
It wasn’t until I was sitting in the doctor’s office, trying to explain what I was eating on a typical day (“Trail mix,” I explained, “and then I eat ice cream if I think I might faint”), that it finally hit me that I’d been duped.
5. It became my ‘new normal.’
Eating disorders are built on a house of lies, but if it’s the only house you’ve ever lived in, you just won’t see it that way.
One of the things that’s been most jarring about eating disorder recovery is realizing how skewed and even broken my barometer was around food.
I don’t remember what it’s like to feel “full” because I’ve spent so long being hungry. Things that I considered “a lot of food” turned out to be very little food to everyone else. I didn’t understand the difference between a meal and a snack.
I was convinced that hunger wasn’t a prompt that our bodies give us to eat, but rather, something that I had to fight to suppress by calculating the minimal amount of food I would need to manage. In other words, to me, hunger wasn’t natural — it was an ailment or a problem to “fix.”
When you have a relationship like this to food and to your body for a long time, it becomes the only reality that you know.
It’s like when my dietician asked me to have a nutritional shake and trail mix for breakfast, and I blurted out, “In the same sitting?” Hearing myself say that made me realize that, all along, I’d constructed rules that were strictly define by my fears, rather than the reality of what my body needed.
Recovery, for me, has been about completely dismantling that house of lies. It’s learning to be skeptical of everything you believed to be normal, and rather than allowing your eating disorder to dictate what “normal” is, it’s letting your body guide you to create an entirely new paradigm.
That paradigm is one that doesn’t react to hunger from a place of fear and trauma (fight or flight), but rather, from a place of body trust.
6. Having an eating disorder didn’t feel the way I thought it would.
I genuinely believed that if I had an eating disorder, I would have felt miserable all the time.
I was supposed to be angry, volatile, depressed! Instead, even in the midst of my disorder, I didn’t have the extreme despair that I assumed would accompany something as serious as an eating disorder.
But the reality is, eating disorders don’t always co-occur with a mood disorder. Mine didn’t — I have obsessive-compulsive disorder, not depression.
So if you’re expecting yourself to be constantly depressed? That may not be how EDs show up for you specifically.
You might actually feel “fine” — but it doesn’t mean that you are.
Mood swings can be part of it (and I certainly had my fair share), but some of us are more likely to experience emotional numbness, anxiety, irritability, restlessness, or even euphoria, rather than depression.
There is so much happening chemically in the midst of an eating disorder, it can be hard to predict how our emotions will respond, except to say that they can be super unpredictable.
Eating disorders are coping mechanisms, and as such, there really is no way you are “supposed” to feel in order for your eating disorder to be valid.
Truthfully, I felt the most depressed and despondent in recovery, when I first tried to start eating again. When I had to actually sit with my fear and discomfort instead of restricting, that’s when my mood absolutely crashed.
The misery that I felt when I started in recovery made it even harder to believe I had a problem, too. I kept thinking, “If this is treatment, shouldn’t it be making things better?”
But I promise you, that’s normal! Sometimes it does get worse before it gets better — and that’s just part of the process.
7. I thought I ‘knew better.’
I wrote about this in my last blog but it bears repeating: Anyone, even mental health advocates who write about this shit for a living, can have an eating disorder.
One of my gorgeous friends in recovery said to me recently, “Sam, you’re talking about eating disorders as though they aren’t mental illnesses.”
And that was the crux of the issue, really — I believed that if I had the right attitude, the right meal plan, or shared enough body positive Instagram posts, I could worm my way out of having an eating disorder.
But eating disorders are mental illnesses and they have to be treated as such. Reading a book or taking a selfie in a crop top can be empowering, and it can open the door to recovery, but eating disorders require more than positive thinking.
I needed help.
Eating disorders are so much bigger than an attitude adjustment. It’s asking you to create an entirely new relationship to your body, to your food, and to the world around you. That is a lifelong process — but a worthwhile one, too.
I’ve had an eating disorder most of my life, and yet it was unrecognizable to me.
And I can’t help but feel that, in a culture that was simply more informed about what eating disorders are and the diverse ways they show up, we’d all be much quicker to recognize them in ourselves and our loved ones.
That’s ultimately why I’m sharing my experiences so openly. I want each one of us to be able to embrace recovery, knowing that our struggles are valid regardless of how they compare to anyone else’s.
Please know: If you’re struggling with food for any reason — if it scares you, makes you angry, overwhelms you, whatever it is — there’s no harm in reaching out and talking to someone.
I’d recommend getting in touch with the National Eating Disorder Association, where you can chat with folks who are the experts in recognizing these complex disorders.
You deserve whatever support and affirmation you need to have a safe relationship with your body and with food.
And I hope that someday, we’ll live in a world where those relationships are modeled for us, so that we never have to question what that looks like.
Want more real talk about recovery?
The conversation continues over on Patreon, where I film weekly videos talking about mental health, recovery, self-care, and more. This week’s video dives deeper into how social media can perpetuate denial in recovery — go check it out!
I don’t usually write about my mental health when things are “fresh.”
Not in the last couple years, anyway. I prefer to let things marinate, and to make sure that the words I choose are empowering, uplifting, and most importantly, resolved.
I prefer to give advice when I’m on the other side of something — largely because I know I have a responsibility to my readers, to make sure I’m nudging them in the right direction. I know this blog can be a lifeline for folks who need something hopeful. I try to remember that.
But sometimes, when I perfectly package that hope for an audience, I can delude myself into thinking that I’ve cracked the code and, therefore, can tidily leave a struggle in the past. The perfect conclusion to the chapter, as it were.
“I know better now,” I think to myself. “I’ve learned my lesson.”
If you were to Google “transgender body positivity,” I’m fairly sure more than a few things I’ve written will come up. I’ve been interviewed for podcasts and articles, and hoisted up as an example of a trans person who — in a simple shift in perspective and following the right insta accounts — came to redefine his relationship to food and to his body.
I wrote all three of these. Delightful.
That version of events is one that I love, because it’s so simple and comforting. One shiny, bright epiphany, and I emerge victorious, having evolved beyond any worldly, frivolous concerns about my stretch marks or eating ice cream for breakfast.
“Fuck you, diet culture!” I jubilantly exclaim. “I know better now. I’ve learned my lesson.“
When you are a mental health advocate and writer, especially in such a public way, it’s easy to trick yourself into thinking that you have all the answers to your own problems. But that illusion of control and self-awareness is exactly that — an illusion, and a deceitful one at that.
It’s easy to point to the years I’ve spent in this space, and everything I’ve published about this exact thing, and insist I’ve got things under control. It’s not my first rodeo, pal. Or second. Third. Fourth. (I’ve got experience on my side.)
If I can support others through their recovery, surely I can navigate my own. Even as I write that, I know it’s patently ridiculous — giving good advice is much easier than applying it to yourself, especially where mental illness is concerned.
But the version of me that I prefer is the one that said in this interview, as recently as last June, “When you get to the other side of whatever you’re struggling with, you’ll see that not taking those chances — living only half the life you could’ve been living — is a lot scarier than any disaster you imagined would come from eating that slice of cake or whatever it was.”
Says the person who is, really and truly, living in that fear in a life half-lived right at this very moment.
Body positivity has felt like a relationship I dove into at such a young age, long before I knew myself or even my eating disorder. And once I was in too deep, having positioned myself as triumphant, I didn’t know how to step back enough to ask for help.
I wanted to believe it was like an incantation I could say in front of the mirror several times — “all bodies are good bodies! all bodies are good bodies! all bodies are good bodies!” — and POOF! I was absolved of any guilt, shame, or fear I felt around food or my body.
I could say all the right things, like a script that I’d rehearsed, and love the idea and the image of myself when I peered through those rosy-colored lenses.
But where eating disorder recovery is concerned, a script — even when memorized — is not a substitute for the work.
And no amount of Instagram memes and photos of belly fat could touch on the old, painful wounds that had positioned food as my enemy, and my body as the site of a war.
Which is all to say, I am not recovered. The work hadn’t even begun. In fact, I used my proximity to body positive spaces to disregard the very idea that I needed help — and I’m paying the price physically, mentally, and emotionally now.
I wore body positivity like an accessory, to project the image of myself that I wanted to be, and my eating disorder reveled in the idea that I could suspend the reality of my illness simply by curating my social media accordingly.
My understanding of body positivity — and by extension, its roots in fat acceptance and liberation — was shallow at best, but only because my eating disorder thrived so long as I sustained the illusion that I knew better. This was yet another way of convincing myself that I was in control, that I was smarter than my ED.
My disorder had a vested interest in lulling me into a false sense of security. I couldn’t have an eating disorder, I thought — disordered eating, maybe, but who doesn’t? I couldn’t because I was evolved. As if mental illness ever gives a fuck about the books you’ve read.
Eating disorders have a way of sneaking up on you. That realization is a new one for me — not because I didn’t logically understand that, but because I’ve only come to accept it in the context of my own lived experience in the last few days.
And I wish I could say that this epiphany came to me on my own, inspiring me to reclaim my life, but there’s no such heroism here. It came to the surface only because my doctor asked the right questions during a routine checkup, and my bloodwork revealed what I feared to be true — my body was coming undone in the absence of adequate, much less nutritious, food.
“I don’t understand how people decide when to eat,” I confessed to my therapist. His eyes widened with deep concern.
“They eat when they’re hungry, Sam,” he said gently.
At some point or another, I had utterly forgotten that simple, basic fact. There is a mechanism in the body, intended to guide me, and I’d cut all ties to it completely.
I don’t share this as a criticism of myself, but rather, as a very simple truth: Many of us who are lauded as faces of recovery are still, in many ways, right in the thick of it along with you.
Sometimes what you’re seeing is not a portrait of success, but rather, a small piece of a more elaborate, messy puzzle that we’re frantically trying to assemble behind the scenes, so that no one notices that we’re in pieces.
My eating disorder recovery is, in truth, in its very infancy. I’ve only recently stopped using “disordered eating” to obscure the reality, and this morning, finally spoke to a dietician that specializes in EDs.
This morning.
Today is, in actuality, the first real day of recovery. That’s three years after, by the way, I wrote these words: “No more justifications. No more excuses. Not another day . . . this is not control.”
I know there are readers who might have looked at my work in body positivity, and absorbed the misguided notion that eating disorders (or any kind of body negativity or food aversion) are simply mazes that we think (or in my case, write) ourselves out of.
If that were true, I wouldn’t be sitting here, sharing with you a very uncomfortable truth about recovery: There are no shortcuts, no mantras, and no quick fixes.
And as we glamorize the idea of an easily attainable self-love — as though it’s just one perfect crop top away — we miss the deeper work that must be done within ourselves, that no amount of sparkly, inspirational quotes we retweet can replace.
Trauma is not on the surface, and to strike the heart of it, we have to go deeper.
This is an awful and uncomfortable truth that I am coming to grips with — mainstream, watered-down body positivity can open the door and invite us in, but it’s up to us to do the real work of recovery.
And that begins not externally, but within us. Recovery is an ongoing commitment that we must choose every single day, deliberately and courageously, with as much rigorous honesty with ourselves and our support systems as humanly possible.
No matter how we curate our social media to remind us of where we’d like to be, the aspirational vision we create is never a substitute for the reality that we’re living in.
As is so often the case with eating disorders, I’m realizing, the aspiration — that “what could be” — so often becomes a compulsive, maddening drive, where we live in a future that we never arrive at.
And unless we commit ourselves to being grounded firmly in the present, even (and especially) when it’s uncomfortable to be here, we relinquish our power and fall under its spell.
My ED loved the naïveté of Insta-friendly body positivity, leveraging that illusion of safety to delude me into thinking I was in control, that I was better than all this.
And I can’t say I’m surprised by it — EDs seem to take many of the things we love (ice cream, yoga, fashion) and turn them against us in some way or another.
I don’t have all the answers, except to say this: We are works in progress, all of us, even those that you look up to. A pedestal is a lonely place to be, and loneliness, I think, is where eating disorders (and many mental illnesses) often thrive. I’ve been up here for too long, silently waiting to fall or for it to crumble underneath me — whichever came first.
As I make my descent, slowly climbing down from the pedestal and stepping into the light of my recovery, I’m going to embrace the truth that every one of us needs to remember: It is okay not to be okay.
It’s okay to not have all the answers, even if the rest of the world expects you to, even if you expect yourself to.
I am not, as some people have described me, “the face of transgender body positivity.” If I am, I don’t want to be — I don’t want any of us to be if that means we’re not allowed to be human.
I want you to scrub that image from your mind and, instead, know where I really was yesterday: Clinging onto a nutritional shake for dear life (literally — it’s kept me alive these last few months), having not showered for three days, while texting the words “I think I need help.”
So many of the advocates you look up to have had equally unromantic but profoundly brave moments just like that.
We do every single day, whether we have a selfie to prove it happened or not. (Some of us have group texts, and trust me, we are all on the Hot Mess Express together. Promise.)
If you’ve felt like you’re not allowed to “fail” (or rather, have an imperfect, messy, even fucked up recovery), I want to give you permission to live that truth, with every bit of honesty and vulnerability that you need.
It’s okay to let go of performing recovery. And trust me, I know how big of an ask that is, because that performance has been my security blanket (and the source of my denial) for so, so long.
You can surrender to the doubt, the fear, and the discomfort that comes with doing the work, and give yourself permission to be human. You can let go of that control and — I’m told, anyway — it will all be okay.
And this amazing community of recovery warriors that we’ve created with our memes, our inspirational quotes, and our crop tops? We will be right here, waiting to support you.
I can’t say that I know this for certain (hello, Day One), but I have a strong suspicion that this kind of honesty is where the real growth happens. And wherever there’s growth, I’ve found, that’s where the healing truly begins.
And that’s what we deserve, every one of us. Not the aspirational kind of healing, but the deeper stuff.
I want that for me. I want that for all of us.
Struggling with food? Body stuff? Or just need someone to talk to? The National Eating Disorder Association (NEDA) is a wonderful place to start. They’ve been an incredible resource for me — and I hope they’ll be for you as well.
Before you go…
This blog is not sponsored by any fancy pants investors that are trying to sell you stuff.
Every donation counts. Help keep resources like these accessible to everyone that needs them! And help buy me a cup of coffee, because I write a lot of these blogs after work, late at night, so I could definitely use the caffeine.
Y’all, I did this super scary thing where I talked, unscripted, for half an hour about the intersections of fatphobia and transness, along with sharing SO many feelings that I have about body positivity.
I did this with the amazing Elizabeth Cooper, founder of the Queer Body Love Speaker Series! You can learn more about it by clicking this link right here.
Their introduction to my interview is super generous and makes me feel important! Check it out:
More people have recommended Sam Dylan Finch as a speaker for this series than anyone else. He’s the most famous advocate for trans inclusivity within the body positive movement, and in this candid interview he shares about his own experience as a non-binary trans person who has both learned from and has critiques of the body positive movement. This topic of navigating a fatphobic, transphobic society is SO important and has something to contribute to us all.
Interview highlights:
Why “every body is a bikini body” body positive beach photoshoots are exclusive (and how to reframe such projects to be trans inclusive)
2 impactful lessons Sam has learned from body positivity
Why Sam literally sits in front of a mirror staring at his body (this is a unique exercise I haven’t heard of before)
How to deprogram internalized voices of oppression
The difference between dysphoria and dysmorphia
What it means for Sam to be a non-binary trans person & how this relates to his relationship to his body
I’m not sure if I’d call myself famous (read: I would not call myself famous), BUT OKAY ELIZABETH. I am flattered!
If you sign up on the website – which just involves sharing your email address – you’ll gain access not only to my interview, but to dozens of other interviews from queer folks and queer-competent clinicians, talking about the many complexities of queer body image!
And before you tell me, “Sam! You’re only saying this because they paid you,” umm, EXCUSE ME. I did this for free!
I did this because I genuinely believe these are some of the most important conversions to be having right now, in a society which tells transgender people in particular that they are inherently broken, and as fatphobia and gendered ideals fuel disordered eating in our community.
And if you’re not interested in watching my face make weird expressions while I talk about this, or if it’s simply not an accessible format for you, there’s also a transcript available so you can simply read what I (and all the other speakers!) had to say.
It’s rare that I put myself on video without a script to talk about these things, but this was a unique occasion in which I wanted to connect directly with folks who, like me, are trying to navigate body positivity – which is a profoundly cis-centric movement – while also being transgender or non-binary.
So really, go sign up! I promise it’s not a scam (well, if it is, we can be victims together, okay, because I totally signed up too). It’s just a bunch of queer people who want to talk about our bodies in a way that we seldom have the space to do.
And be sure to spread the word! I can think of countless queer and trans people who need access to these conversations. Let’s bring everyone to the table. Let’s support and uplift one another in our journeys toward self-acceptance.
“I’m sorry, are you publicly asking me about my genitals or am I mistaken?” @SamDylanFinch
If you asked me where the vast majority of my online harassment comes from, you might be surprised to know that it comes from other transgender people.
Ever since I published this article on why body dysphoria is not what makes a person transgender, the pushback on social media by a small but vocal minority has been intense.
The efforts to silence me, all on the basis that I am not “trans enough,” has revealed a really dark side to the trans community that I never knew existed.
This minority has consisted of transmedicalists (also referred to as truscum), who believe that the only valid transgender people are those who experience body dysphoria, desire a “binary” medical transition, and are pursuing hormones and surgery.
All other trans people are not considered “true trans,” and are referred to as traps, imposters, transtrenders, or fakes.
Are you offering to buy it for me? How sweet.
I remember the first time I was ever harassed by a transmedicalist. I had been (desperately) trying to navigate a complicated insurance policy, having been living in Michigan where testosterone was not covered and now being in California with the same insurance but distinctly different laws.
It was an emotionally exhausting time as I tried to figure out what my options were for beginning my medical transition, coming up against legal hoops and road blocks galore.
It was around that same time that a transmedicalist appeared in my Twitter mentions, accusing me of pretending to be trans for attention and tweeting to followers of mine that they should withdraw support from me because I was not yet on testosterone.
Imagine the hell I was already in: I wanted testosterone and I couldn’t access it. I was struggling to figure out how to come out to my family, fearful of rejection. Every day I was trapped in a body that I could not change, sitting on a secret that I was convinced would destroy my family.
And then a transmedicalist – someone in my community – was punishing me for not having the very thing I was trying desperately to get. It was a slap in the face.
I can’t describe the pain to you. After all of my struggles as trans – the self-hatred, the desperation, the dysphoria, the self-harm, the confusion – I was being told that I was faking it.
Faking it.
I hadn’t known up until that point that there were actually trans people that thrived on being violent towards other trans people. I didn’t think a transgender person would ever intentionally misgender, harass, and silence other trans people.
But they’re real. They’re out there. And every so often, they pitch a fit on social media, hurling violent language in my direction. They ask me invasive questions about my body, intentionally misgender me at every opportunity, interrogate my validity as a trans person, and mock my transition.
Misgendering me AND making fun of gender-affirming surgeries… cute!
It can be tempting to say that these folks are simply an exceptional bunch – not really representative of the community, something we should ignore or disregard.
It can be tempting to write them off as a small minority that poses no real threat to the larger community.
But I’m not here to do that.
I’m exposing this harassment publicly – including just a fraction of some of the tweets I received in one day – because the trans community needs to acknowledge that these kinds of toxic ideologies exist in our spaces.
We can’t maintain the attitude that if we keep them out of sight and out of mind, everything is okay.
It’s not okay.
The reality is that our community can’t continue to ignore a harmful, violent minority that actively excludes, attacks, and misgenders people under the guise of “protecting” transness.
Our community can’t continue to ignore the harassment that non-binary people in particular are enduring because we refuse to speak out against toxic and exclusive definitions of transness.
Our community can’t sit on the sidelines while this violent rhetoric continues to silence, shame, and harm trans people everywhere.
If we give other trans people a free pass to attack our integrity and our identities, what do you think will stop cisgender people from doing the same?
Transgender people are not defined on the basis of their bodies. They aren’t the surgeries they may get or the hormones they may (or may not) pursue.
Transness is an identity, a sense of self in relation to culturally constructed ideas about gender. It’s how we identify; it’s the framework that we place ourselves within to better understand who we are. And it’s fucking personal.
Every person should be able to define their gender on their own terms. Otherwise, what the hell are we doing? We fought to reclaim our genders from those imposed on us at birth. So why would we impose it again onto other trans people?
Real talk: “Transgender” is not an exclusive club that we can bar people from because they refuse to conform to cisnormative ideas about bodies and gender.
When we deny transgender people the right to self-identify, that is an act of violence. How can we demand respect as a community when we aren’t willing to respect one another?
There are countless transgender people who either do not want to pursue a medical transition (their prerogative), or are unable to access it due to financial barriers or abusive caretakers.
They are arguably the most vulnerable in our community, and they are subjected to abuse not just from the outside world but from people in our own community.
If we are not denouncing this kind of violence against other trans people – if we sit idly while they spew this kind of hatred – we become complicit in it.
We allow people in our community to be degraded, erased, and attacked when this kind of behavior goes unchecked and unacknowledged. And by extension, we give transphobic people outside the community full permission to engage with us in the exact same way.
Transmedicalists are not unicorns or make-believe. They attack me and countless others on a regular basis, with more fervor than the time before, feeling emboldened by the total lack of accountability.
It’s easy to say they aren’t really a part of our community. It’s easy to ostracize them, block them, dismiss them.
It’s more difficult – and yes, truly necessary – to realize that underneath the violence is a shaken, fragile, and troubled transgender person who is still a part of our community. For that reason alone, we must call them in.
It’s more difficult to say that, as a community, we must act – because if we don’t, the violence will continue.
Yes, it’s our responsibility to hold them accountable, and to stand in solidarity with those who have suffered at the hands of their abuse.
Because if we aren’t taking care of each other, who is going to stand up for us?
Today, I was harassed. But tomorrow, it could be you.
