Inspiring stories of anorexia or bulimia “recovery” make headlines, but for those struggling with the lifelong disease, the message may cause more harm than good.
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Recently, actress Camila Mendes spoke out about her experience with disordered eating and treatment. It was a brave move, publicly discussing her history of bulimia and acknowledging that she needed help to get better.
Mendes shared that she began to see a therapist, who recommended she see a nutritionist, as well. She said that this recovery process had “changed her life,” that her nutritionist had cured her of her obsession with carbs, and that she is now free of dieting.
I read her words and cried through every one of them because I know how hard it is to speak publicly about an eating disorder—and I know how harmful it is to perpetuate, even unintentionally, the myth of a quick and easy recovery.
Too often, we frame recovering from an eating disorder as a linear path—you are sick, you go to treatment, you learn about food, you talk about feelings, you get well, you’re cured. Much like the myth of the perfect sexual assault victim, the perfect eating disorder recovery is predicated on the false and ultimately harmful notion that there is one right way to do something. And if you can’t do it, it’s your fault—you are wrong.
I know because I’ve struggled with bulimia for 16 years.
Eating disorders are diseases that lend themselves to misconceptions and mischaracterization. They are intensely private, personal, and chronic and center on food. What they are not are “lifestyle choices.” In reality, eating disorders are serious illnesses that cause severe disturbances in people’s eating behaviors. While the exact cause of eating disorders is still unknown, according to the National Institute for Mental Health, a combination of genetic, biological, behavioral, psychological, and social factors can all raise the risk of an eating disorder. They are also incredibly common—approximately 30 million people in America will deal with an eating disorder at some point.
Recovering from an eating disorder can be just as complex. Recent research found that two-thirds of anorexia and bulimia patients do recover from an eating disorder nine years post-treatment, but that still leaves one-third of patients struggling to recover a decade post-treatment. Not only that, but the definition of “recovery” varies, even among clinicians and people who are suffering from eating disorders. And what works for some patients may not work for all.
“When folks come in to see me, they often ask how long it’s going to take to recover,” says Dr. Sarah Adler, attending psychologist in the Eating Disorder and Weight Control Clinic at Stanford University. “I first tell them that each individual has a different course of recovery. I explain that evidence-based treatments we use have been tested in clinical trials for 16 to 20 weeks, and we hope for a certain level of symptom reduction in that time, but that recovery from an eating disorder can be a lifetime of work.”
It certainly has been for me.
I have hated my body for as long as I can remember. That’s not hyperbole—I truly, honestly cannot remember a time when I didn’t loathe it. When I was 7, I would stand in front of the mirror and clutch my stomach in disgust. At 12, I would toss my lunch into the garbage in the vain hope that it would somehow change my body. Throughout my childhood, I was surrounded by constant messages that my body was a problem, from the craze of “heroin chic” thinness to my own parents taking me to a nutritionist when I was a chubby 11-year-old girl. And there was trauma, as there often is for people with eating disorders. I was taught early on that my body was bad, that I was bad. My body had to be controlled. And I had to control it.
I don’t remember much from the first time I purged, but I do remember how it felt. It was like hitting a release valve. I was 16 years old. It was far from my first time flirting with disordered eating, but it was the one that stuck. For the longest time, I didn’t consider it an eating disorder. I internalized the lie that, because I didn’t purge every day, it wasn’t a real eating disorder. But my disordered eating grew over time, worsening in college, and reached a fever pitch once I graduated in 2008 to the point where I was purging nearly every single day.
I finally acknowledged that I was bulimic in the spring of 2009, seven years after I had first purged. It was an average day, but for some reason, I saw myself differently. I saw it differently. I stared into the mirror and the weight of what I had just done, of what I had been doing for years, knocked me over. I called my mother, crying, and said, “Mom, I have something to tell you.”
And then I did what you’re “supposed to do”—I got help. I found a therapist and she, like Mendes’s therapist, requested that I see a nutritionist, a truly wonderful woman named Oehme Soule. Oehme was really more than a nutritionist or dietitian—she was my food therapist. I re-learned how to eat, how to feel full, how to listen to my body. We talked openly about food, about anxiety, about flavors and ingredients and biology and emotions. It was liberating in a way I never thought possible.
Immediately, I stopped purging. Soon enough, I actually started losing weight. I was elated. This was it! This was the secret! I just had to learn how to portion out my food and talk a little about my feelings, and not only am I now cured, but I know how to be thin—everything I’ve ever wanted!
It didn’t work out that way.
With eating disorders, “relapse” is common. According to some research, as many as one-third of bulimia nervosa patients will relapse within two years of their initial recovery. Researchers at the University of Toronto have found that relapse rates for anorexia nervosa range from 9 to upwards of 65 percent. While not every patient will relapse, it is an incredibly common experience among many who are recovering from an eating disorder. Eating disorders are themselves forms of addiction, and research shows us that, like recovering from substance abuse, eating disorder recovery often includes relapse as part of the process.
This has been true for me.
Bodies change—that’s what they do. After my initial weight loss, my “post-recovery” weight began to fluctuate again. Instead of being cured, I became even more fixated on food. Before my first bout of therapy, when I was binging and purging, I never really thought about what kinds of food I was eating—I didn’t restrict, and it wasn’t a part of my eating disorder. But over time, after my initial “recovery,” I became even more obsessed with food, more obsessed with control, more obsessed with my body.
Quietly, I began purging again.
“Often, patients use information from well-meaning dietitians or nutritionists, or even from the internet, as another rule to apply, another way to think rigidly about their food and their bodies,” says Adler. “The whole point is getting people to interact with food and their bodies in a way that is flexible. If applied too rigidly, any information can cause harm.”
Eating disorders are shame-filled, private diseases. That’s part of what fuels them. We keep them hidden because to those of us who struggle with them, they reflect what we believe is the deep, painful truth about ourselves—that we are disgusting and inherently shameful. Before that day in 2009, when I realized I was sick and called my mother to tell her I was sick, I had never shared a word about my binging and purging with anyone.
But when I began purging again, it was even more sinister. The secret was even deeper and more shameful. In my initial “recovery,” I told select people in my life that I had an eating disorder, but it was always framed around the past. I was cured! I was fixed! I went to therapy and took care of it and lost weight and was feeling great, thanks for asking!
But I wasn’t. I was still sick. Eventually, I called Oehme and told her that I was purging again. She helped me find a new therapist. I did hard, painful work for years. I’m still doing hard, painful work. I may always be doing hard, painful work.
That is the truth about my eating disorder recovery.
Everyone’s recovery is different. I don’t know Camila Mendes. I don’t know her recovery. I only know my own. I remember the vivid, pulsating euphoria I felt in those first few months of my initial recovery, thinking that I had solved it, that I was cured, that everything would be different and I never had to worry about this again.
And I remember the horrific shame and piercing pain when I realized that none of that was true for me.
That’s the danger of believing in a linear eating disorder recovery, in the myth of the elusive cure—it helps keep us sick by believing that we are bad or wrong, that recovery is possible for everyone else but somehow, not for us. Ironically, the myth of the perfect eating disorder recovery can keep us from actually having anything resembling a real eating disorder recovery.
Earlier this year, a dear friend said to me, “We are only as sick as the secrets we keep.” I’m 33 now. I have spent half of my life dealing with disordered eating and body dysmorphia. So few people in my life know that this is still something with which I struggle. I am terrified to write this, to share this with the world, because this is the most shameful thing in my life. But I can’t allow the myth of the perfect recovery to endure because I know, for me and for so many of us, that it keeps us sick.
Camila Mendes is recovering. I am recovering. I will never not be recovering. Recovery is a process, not an end goal. There is no perfect eating disorder recovery. There is no magic secret, no quick fix. Maybe you’re struggling. I’m struggling, too. I can’t imagine a point when my life will be “changed” and this won’t be a part of my daily consciousness. Maybe there will never be one. And if that’s true for you, at least know this: You are not alone.
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