As I entered the homestretch of my treatment for an eating disorder, over 10 years ago, my therapist and I talked about how I’d navigate the real world and keep myself healthy once our therapy came to an end. “Healthy” for me meant eating regular meals, not starving myself or restricting food, and not making myself throw up, things I’d been doing on and off for most of my adult life.
In treatment, I practiced new habits, challenged old beliefs, and yes, gained weight. I had been determined to ace my recovery (sadly, they do not give out grades), not fully appreciating that perfectionism and black-and-white thinking are traits shared by many people with eating disorders.
Now, I was done with therapy—in the sense that the prescribed course of behavioral treatment was complete, but also “done” in the sense that I was over it. Ready to get off this too-soft beige couch and re-enter the world as the New, Recovered Me. My eating disorder was in the past, and I sat at attention for every last bit of recovery wisdom.
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“If you feel yourself slipping, if you eat a meal and have the impulse to purge, take a moment,” my therapist offered. “Instead of throwing up, write in your journal or do a crossword.”
Wait. What? I looked at her, sitting across from me, smiling kindly. Was she serious?
I understood her larger point: Wait for the moment to pass. Feeling full made me panic. Throwing up offered instant relief. In therapy, I learned that if I waited 15 or 20 minutes, both the fullness and the panic would pass. But, come on. Journal? Crossword? Had she never thrown up before? Felt the exhilaration and high? Had she never starved herself until her head was clear and buzzing, and every single thing in life felt in order? Yes, I liked writing in a journal. But I had a black-belt in self-destructive behavior. Didn’t she have anything better?
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Not really. For a time, therapy helped end my most harmful behaviors, but I wasn’t equipped with much to sustain recovery. In the years that followed, I’ve had more relapses than I care to count, returning to those behaviors like an old, bad influence friend in times of stress, sadness, or feeling out of control in another area of my life. It’s not something I talked about because it was embarrassing. I wondered what was wrong with me that treatment didn’t “stick.” And then I started talking with other women, who told me their experiences were the same. They got treatment, but the eating disorder was still lurking.
As a journalist, I set out to research eating disorder recovery and quickly came across figures indicating that even in the best of circumstances where, like me, someone is diagnosed, has access to health care, and gets evidence-based treatment. The rate of relapse can be up to 70%.
I was among the most fortunate. People within the BIPOC community are half as likely to be diagnosed or received treatment as their white counterparts, and by some estimates, may be more likely to suffer from eating disorders.
Eating disorders have among the highest mortality rate of any mental illness. Of the estimated 30 million Americans who will have an eating disorder in their lifetime about 20% may receive treatment, with no guarantee of long-term recovery. Even the National Eating Disorders Association, the largest non-profit supporting people with eating disorders and their families, hedges on the topic, writing on its website: “Eating disorder researchers have yet to develop a set of criteria to accurately define what factors are necessary [to maintain recovery].”
Funding for eating disorder treatment is scant. In 2022, the National Institutes of Health spent an estimated $53 million on eating disorder research. Eating disorders are complex illnesses—new research points to neurological components, along with trauma, stress, a history of dieting, and many other factors. In the U.S., there is no standard of care, meaning that, while there are treatments like cognitive behavioral therapy, that are researched and have helped many patients, there is no agreed upon or regulated standard. I could hang a sign outside my apartment tonight, saying that I treat eating disorders and would not have to offer evidence-based care.
Add to that, recovery from eating disorders is set against the backdrop of a culture that prizes thinness and fitness and often equates low weights with health. Recently, there has been a surge in demand for Ozempic—a diabetes drug—by non-diabetics who are using the drug off-label for its appetite suppressant effects. People are talking about its weight loss “benefits” more than its scary side effects, among them pancreatitis and vision changes. In this landscape, how are those of us recovering from eating disorders supposed to navigate avoiding a relapse?
Read More: What the Ozempic Obsession Misses About Food and Health
It begs a larger question: Is full recovery possible? When am I done? Interviewing esteemed researchers, treatment providers, and other women who have suffered and continue to suffer, I came to understand that the reasons why recovery so often doesn’t “work” is because the solution is as complex as the disorders themselves. The road to healing is jagged.
Eating disorder survivors are some of the best advocates and may be our best hope for long-term healing. Kristina Saffran—who, as a teenager, founded Project HEAL, a non-profit that helps people find treatment and helps pay for it—went on to create Equip Health, an online treatment for eating disorders that takes insurance and provides patients with a five-person care team: therapist, dietician, physician, peer mentor, and family mentor. Having been in and out of treatment herself, one of her top priorities is recovery maintenance and the mentors are the “secret sauce,” to this as she put it to me, having someone in your corner who’s been through it.
Gloria Lucas, an educator who is transparent about her own history of relapse, founded Nalgona Positivity Pride, where she focuses on eating disorder awareness in the BIPOC community, offers support groups, and information about harm reduction for folks who may not be ready for or even interested in abstaining from eating disorder behaviors, but wish to improve their quality of life. This level of nuance is imperative in reaching a swath of the population that is so often overlooked when it comes to eating disorder care.
Many of the final pieces of my recovery came together while I was writing my book. As I educated myself and experimented with new coping tools, I noticed my own obsessions with what I ate or how much I exercised, begin to quiet. I learned new skills to manage my anxiety, which, for me, is directly connected to my eating disorder. I gained a deeper appreciation for how pernicious and deeply engrained our weight-obsessed culture is. Now I know that when I have a negative thought about my body image, it’s not my inner voice. It’s an external one that wants me to dislike myself enough to buy something.
I wasn’t sure if healing from an eating disorder was possible because my own experience was initially so disappointing. Now, I’ve changed my position. It looks different for different people. In talking with hundreds of women, I became part of a dissatisfied but hopeful community of people who want to get better, demand better treatments, and believe that it’s possible.