AAs I entered the final stretch of my treatment for an eating disorder over 10 years ago, my therapist and I talked about how I would navigate the real world and stay healthy once after our therapy is over. “Healthy” for me meant eating regular meals, not starving or restricting food, and not making me vomit, things I had been doing intermittently for most of my adult life.
During treatment, I practiced new habits, challenged old beliefs, and yes, I gained weight. I was determined to be successful in my recovery (unfortunately they don’t give grades)not fully appreciating this 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 above. Ready to get off that overly soft beige couch and reenter the world as New, Recovered Me. My eating disorder was a thing of the past and I sat to attention for every last bit of recovery wisdom.
“If you feel yourself slipping, if you’re eating a meal and have the urge to purge, take a moment,” my therapist offered. “Instead of throwing up, write in your journal or do a crossword puzzle.”
Wait. What? I looked at her, sitting across from me, smiling kindly. Was she serious?
I understood his 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, the fullness and panic would pass. But come on. Log? Crossword? Had she ever vomited before? Felt the euphoria and high? Had she ever starved herself until her head was clear and buzzing, and everything in life felt in order? Yes, I liked to write in a journal. But I had a black belt in self-destructive behavior. Didn’t she have anything better?
Learn more: Coronavirus Presents New Challenges for People With Eating Disorders – Here’s How Survivors Seek Help Online
Not really. For a while, therapy helped me stop my most harmful behaviors, but I didn’t have much to recover from. In the years that followed, I had more relapses than I care to count, reverting to these behaviors like an old bad influence friend in times of stress, sadness, or loss of control in another area of my life. my life. It’s not something I talked about because it was embarrassing. I wondered what was wrong with me that the treatment didn’t “stick”. And then I started talking with other women, who told me their experiences were the same. They received treatment, but the eating disorder was still present.
As a journalist, I set out to research recovery from eating disorders and quickly came across numbers indicating that even in the best of circumstances where, like me, someone is diagnosed, has access to health care and receive evidence-based treatment. The relapse rate can be up to 70%.
I was among the lucky ones. Members of the BIPOC community are half as likely to be diagnosed or received treatment like their white counterparts and, by some estimates, may be more likely to suffer from eating disorders.
Eating disorders are among the highest death rate of any mental illness. From the estimate 30 million About 20% of Americans who will have an eating disorder in their lifetime could receive treatment, with no guarantee of long-term recovery. Even the National Eating Disorders Association, the largest non-profit organization supporting people with eating disorders and their families, covers the topic, writing on his website: “Eating disorder researchers have not yet developed a set of criteria to precisely define the factors needed [to maintain recovery].”
Funding for the treatment of eating disorders is insufficient. In 2022, the National Institutes of Health spent approximately $53 million for eating disorder research. Eating disorders are complex illnesses—new search points to neurological components, as well as trauma, stress, diet history, and many other factors. In the USA, there is no standard of caremeaning that while there are treatments like cognitive behavioral therapy, which are researched and have helped many patients, there are no agreed or regulated standards. I could hang a sign outside my apartment tonight saying I treat eating disorders and don’t have to offer evidence-based care.
In addition, recovery from eating disorders takes place in the context of a culture that values thinness and physical fitness and often equates low weight with health. Recently, there has been a surge in demand for Ozempic—a diabetes drug—by non-diabetics who use the off-label drug for its appetite suppressant effects. People talk more about its weight loss “benefits” than its scary side effects, which include pancreatitis and vision changes. In this landscape, how are those of us recovering from eating disorders supposed to navigate avoiding relapse?
Learn more: What the Ozempic Obsession Misses About Diet and Health
This raises a larger question: is full recovery possible? When am I do? By interviewing esteemed researchers, care providers, and other women who have suffered and continue to suffer, I have come to understand that the reason recovery so often doesn’t “work” is because the solution is as complex as the disorders themselves. The road to recovery is strewn with pitfalls.
Eating disorder survivors are some of our best advocates and may be our best hope for long-term recovery. Kristina Safran— who as a teenager founded Project HEAL, a nonprofit that helps people find treatment and helps pay for it — went on to create Equip Health, an online treatment for eating disorders who takes out insurance and offers patients a care team: therapist, dietician, doctor, peer mentor and family mentor. Having been in and out of treatment herself, one of her priorities is maintaining recovery and mentors are the “secret sauce” as she told me, having someone in her corner who has passed over there.
Gloria Lucas, an educator transparent about her own history of relapse, founded Nalgona Positivity Pride, where she focuses on raising awareness of eating disorders in the BIPOC community, offers support groups and harm reduction information for people who may not be ready or even interested in abstaining. behaviors related to eating disorders, but who want to improve their quality of life. This level of nuance is imperative to reaching a segment of the population that is so often overlooked when it comes to care for eating disorders.
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 that my own obsessions about what I ate or how much I exercised began to subside. I learned new skills to manage my anxiety which for me is directly related to my eating disorder. I gained a better appreciation of how pernicious and deeply rooted 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 who wants me to hate myself enough to buy something.
I wasn’t sure that recovery from an eating disorder was possible because my own experience was initially very disappointing. Now I have changed position. It looks different for different people. By talking to hundreds of women, I have become part of a dissatisfied but hopeful community of people who want to get better, demand better treatment and believe it is possible.
More must-reads from TIME