Why Eating Disorder Treatment is Failing Us All
I do not know if there is an in-patient eating disorder treatment center that currently exists that is safe for all people with non-dominant systemic identities at all levels of the organization. I do not know of an eating disorder treatment program for higher level of care where I as a fat, queer, non-binary person would feel safe to attend.
Written by Sarah J. Thompson
Edited by Ashley Seruya
*Content Warning: graphic description of anorexia and bulimia
Photo by Derek Thomson on Unsplash
I couldn’t have an eating disorder.
When I was 16 I started starving myself and lost a lot of weight. I was never offered help. I wasn’t offered outpatient eating disorder therapy, or evaluated for a higher level of care.
It was 1998. I was a Christian teenager who came from a white, working-class family living in a middle-class suburb. I was straight and cis-passing. At the time, I did not have an understanding of eating disorders at all. In fact, even if someone had educated me on what eating disorders were, I don’t think I would have even thought that I was included in that definition. And that, in and of itself, is part of the problem. I had all the symptoms, but because I was fat, it seemed impossible that I could be struggling with something socially defined as a disorder that seemed to exclusively affect smaller people.
In some ways, when I tell my story, I feel that I have to express the deep, intense pathologies that I experienced in order for people to believe me. I barely ate. I’d lie about having a meal, so no one would question me. I would flush food down the toilet to hide food and give the appearance that the food had been eaten. I’d track everything that I ate while making sure it was not above the ridiculously low calorie count that I set for myself. I exercised frequently. I could not stop thinking about food. I could feel my heart pounding in my abdomen when I laid in bed at night with an empty stomach. Despite all of this, I was still perceived as fat according to medical standards.
After several months of this, I stopped being able to tolerate starving myself, and needed a way to cope with eating and my intense fear of weight gain. I started making myself throw up, using diet pills and laxatives to compensate for what I ate. Having to eat heightened my sense of feeling out of control and imposed a greater threat of gaining weight. I spent hours upon hours preoccupied with hiding what I was doing, and I would lie if needed.
My preoccupation with food and potential weight gain didn’t just have an impact on how I behaved around eating. My entire life was affected by the obsession that I couldn’t let go; that was egged on by everything around me. My grades plummeted. I was constantly exhausted. I couldn’t process information easily. I was ashamed of my dishonesty, and fearful someone would confront me about lying.
I was almost the poster child for a Lifetime movie on teen girls with eating disorders. Except I was still fat. And looking back, I’m not sure that I was a girl. So I couldn’t possibly have had an eating disorder. Right?
Despite the fact that I remain fat throughout my eating disorder, I did experience weight loss. And when I lost weight from all of the starving and purging, I was complimented. Instead of being offered eating disorder treatment, which is what I desperately needed, I received copious amounts of praise everywhere I went for losing weight. And so I pressed on. I tried harder. I restricted more.
Being congratulated is what happens when a larger-bodied person loses weight. It does not matter how they lost the weight. It could be from an eating disorder, grief, or even a serious illness like cancer. This is one of the many reasons why we should not ever comment on someone’s weight loss. We do not know the circumstances of why they lost weight. If it happens to be that they lost weight intentionally, we only encourage disordered eating and body dissatisfaction. And that is exactly what happened to me. . .and what happens to so many others like me.
Even now, I wonder if I should tell you details about my experience, because it feel likes I still need to convince others that fat people have restrictive eating disorders. While I know intellectually that I do not need to “prove” to anyone that I had a restrictive eating disorder, there is so much anti-fat bias and misunderstanding about eating disorders in larger-bodied people that my body story needs to be told and heard.
Was It My Fault?
My journey from disordered to healing is long, complex, and winding. Such is the case for most of us who don’t fit the mold of what an eating disorder ‘looks like.’ From 12-step programs to religious-based counseling and classic talk-therapy that, while helpful overall, was still steeped in healthism and fatphobia, it often felt like there was no way out. Even when I thought I was healing, my eating disorder only ended up transforming into orthorexia, an eating experience that isn’t yet included in the DSM manual but is widely accepted among eating disorder professionals as a legitimate disorder. I also grappled heavily with the idea of “food addiction,” and strongly believed that I had an “addictive personality” due to my co-occurring struggles with substance use. It had to be my fault. It had to be because no matter what the substance or experience, I could never stop myself from “indulging.” I was just failing over and over again. I didn’t realize that the harder I tried to pull on the reins, the more my brain rebelled; the more my body tried to save me.
I knew something was wrong. I knew that what I was doing with food was not typical, but really, how could I have had an eating disorder when I was still larger than all my friends? And as my size increased, so did the amount of mental gymnastics it took to deal with all the complicated layers. I was exhausted, and the truth of what I was dealing with was something that I was unable to come to terms or accept because I never saw myself represented in the eating disorder narratives that were out there.
I had an Eating Disorder?!?
Find out more about Desiree Adaway here. Photo by Lindley Ashline on Representation Matters.
The fact that I’m sitting here, writing this right now, means that I did in fact get through this. I had to advocate for myself, unlearn so much damaging messaging about food and bodies, and spend my own hard-earned money to receive the help that I so desperately needed. Through my own research, I found a retreat run by the Be Nourished team, who are among the leaders in shifting traditional weight-centric treatment to a revolutionary weight-inclusive paradigm. I also was exposed to more explicit clinical eating disorder material via a graduate school course. These two elements brought me somewhere entirely new and unexpected. Up until that point, I didn’t know if I had a right to claim that I had an eating disorder when I had never officially been diagnosed with one. And I was baffled.
How did I go for so long with an untreated eating disorder?
How was I only given solutions that led to restricting, a constant emphasis on how much food I ate, and body shaming?
How did I spend so much time in Overeaters Anonymous and not understand eating disorders were not supposed to be treated with restriction?
Why was it that only my friends who were underweight according to BMI were able to receive eating disorder treatment?
Learning the clinical diagnostic criteria for eating disorders after finding recovery with the Body Trust® paradigm, I finally knew. I had an struggled with an eating disorder disguised as a “weight problem”, abstinence, and/or a quest for health for 18 years.
Unfortunately, my story is not uncommon. It is just one among countless others who were and are failed by eating disorder treatment communities.
Poster created by Nalgona Positivity Pride and available on Etsy.
Why is Eating Disorder Treatment is Failing Us All?
I’ve spent time in ED treatment circles over the last two years. I wish I could say that, overall, eating disorder treatment is successful. I would be much more excited to be a part of the field if I could. I cannot. Truly, all I can say is that the eating disorder treatment field has failed and continues to fail. But why?
When I reflect on the vast differences between being able to access treatment for my substance use disorder compared to my eating disorder, I am struck by the sizable gaps. A person could have 6-9 months of SUD residential treatment funded in the Akron, Ohio, US. From my understanding, it is a miracle to get about a month of residential eating disorder treatment covered and you have to know that the resources exists to utilize them. There are also community and county resources available in most areas that provide organizational structure within a system for people with SUDs. This just simply does not exist for eating disorder treatment, even when ED’s have the highest mortality rate of all mental health disorders.
To recover from an eating disorder requires in-person support for meals, behavioral support to learn to cope with emotions, connection with others who are in recovery, and supportive environments to heal from a disorder that affects every aspect of life. It is not something you typically recover from in 30 days. Higher levels of care are still out of reach for those without the financial resources needed to pay for services and to be able to take the time off from school or work.
But aside from the financial access issues that are certainly present, I think that treatment fails for a much larger reason, one that encompasses ALL of the barriers I faced, and other barriers that many constantly come up against. The number one reason why the eating disorder field fails is because eating disorders are not approached as a social justice issue. From financial access to fatphobia, transphobia, racism, gender essentialism, the thin ideal, healthism, and more, when we don’t treat eating disorders as a social justice issue we leave the most marginalized, those suffering the most severely, out in the cold. And if we were to approach eating disorders with a social justice framework, we would enable healthcare providers to address the various risk factors from an anti-oppression perspective and actually address and dismantle the reasons why eating disorders exist in the first place. Without this approach, we will continue to not only fail those who need support and healing, but actively perpetuate the thing we say we are trying to eradicate. And the consequences of attempting to treat eating disorders without considering oppressive systems is bigger than that. When we do not treat the healing of eating disorders from an anti-oppression foundation, there is an immense systemic impact of inequity, disempowerment, and erasure.
But what does a social-justice approach to eating disorder treatment look like? Anti-oppression consultant and Toxic Copy editor, Mckensie Mack, discusses anti-oppression work as healing work. It is also work that concerns itself with intersectional equity, a framework that we all must incorporate into our treatment models if we are to properly and adequately treat everyone in a way that best supports them with their personal marginalization and barriers. If we are to approach eating disorder treatment through intersectional equity, we must be willing to study the ways in which ED treatment disenfranchises based on intersections of identity. Otherwise, we will continue to fail people with non-dominant systemic identities: people of color, immigrants, and LGBTQQIA+, disabled, low-income, and/or fat folx and beyond. We will continue to perpetuate harm on a consistent and widespread basis if we do not work to change the systems that actively prevent focusing on healing through liberation.
Is Eating Disorder Justice Possible?
This quote from Nicole McDermid, Australian social worker and eating disorder recovery coach, is from her open letter to the eating disorders community that she originally read at The Australia & New Zealand Academy of Eating Disorders Conference in Melbourne in August 2018. Watch her reading the full letter here.
I do not know if there is an in-patient eating disorder treatment center that currently exists that is safe for people with non-dominant systemic identities at all levels of the organization. I do not know of an eating disorder treatment program for a higher level of care where I as a fat, queer, non-binary person would feel safe to attend. Some places may be okay at treating fat people with BED without weight stigma, but they may not be safe for a fat person with anorexia. If they are safe from weight stigma, will I also be able to have staff who speak easily about queer relationships and be free from the pressure of heteronormativity? Will they act as if having a boyfriend is a reward for recovery? If an ED treatment center is somehow able to be safe from weight stigma AND heteronormativity, will they get my pronouns right? Will there be gender-neutral bathrooms, so that I’m not forced to choose the safest option for myself? Will they understand the difference between gender dysphoria and body dysmorphia? Will they think that I have to look a certain way to be non-binary? Will I have to expend precious emotional and intellectual labor to educate them while do the intense work of recovering? Will they make it a completely awkward situation and not know where to have me sleep, with the men or the women? Will I be in a room by myself when everyone else has a roommate? If there a higher level of care that offers ALL of these things, will I be able to afford it?
Find the Eating Disorder Justice image on Trans Folx Fighting Eating Disorders’ site here.
Of utmost importance is --- how will the staff interact with clients of color? Will we have staff at all levels who have examined their biases and privileges? Will the staff who is likely to be predominately thin, white, cis, heterosexual, and middle class hold cultural humility, equity, and liberation as core values? Will fat, low-income, disabled, queer and trans, Black, Indigenous, people of color feel comfortable and as safe as possible?
If we don’t have the answers to these questions, or we aren’t even sure how to ask them, we will ever be able to effectively treat eating disorders. If we continue to ignore that social justice, anti-oppression work, and intersectionality are integral parts of treatment, we will never achieve the thing that we most want. And I think, truly, that is the most tragic part of it all. We all want the same thing. We all want less suffering in this world. We all want clients to have more peace with food and their bodies.
But how we as a profession have been and are approaching it right now. . .it’s all wrong. It doesn’t just miss the mark. It actively harms. When the most marginalized people are harmed by eating disorder treatment, it is not safe for any of us. Our freedom around food and body is tied to each other’s. If fat people can’t feel safer in the eating disorder community, how will they ever discover their recovery? If fat people can’t feel safer in the eating disorder community, how will those in thin bodies ever stop being terrified to gain weight? If a fat, black, disabled, trans woman can’t feel safer in our communities, how can we think that treatment is successful? Those of us within this community are responsible for changing it. And those with more structural power are responsible for listening and implementing the changes when barriers prevent those without structural power, people like myself, from doing so.
And so we come back to this: eating disorders are absolutely a social justice issue. If we aren’t all on the same page about this, if we can’t get the eating disorder community to fully embrace this concept, eating disorder professionals will continue to do harm on a daily basis even while they are trying to help. Eating Disorder Justice needs to become the standard of eating disorder treatment in order for true healing to ever be possible. When healing from an eating disorder is accessible to the most marginalized among us, we may finally get a little bit closer to ridding the world of food and body shame.
This quote from Nicole McDermid, Australian social worker and eating disorder recovery coach, is from her open letter to the eating disorders community that she originally read at The Australia & New Zealand Academy of Eating Disorders Conference in Melbourne in August 2018.