misdiagnosed eating disorder

I Had an Eating Disorder for 21 Years—but Doctors Wouldn't Diagnose Me With Anorexia Because of My Weight

Because she didn't look like someone with an eating disorder, Shira Rosenbluth, 31, was caught in a cycle of binging, purging, and restricting her food intake for two decades—until she was correctly diagnosed and started treatment.

This is a special Misdiagnosed article as part of our spotlight, Diet Culture in the Age of Body Positivity.

I was 10 years old the first time I made myself throw up.

It was 1998, a few months after starting my first official diet, which was failing miserably, much to my and my family's dismay. For years I had thought of myself as a chubby kid because I grew up in a family that prized thinness and taught me that my body was wrong. Looking back at old photos, I can see that it wasn't really the case.

But two weeks after starting this diet, I found myself bingeing uncontrollably. I read a book about a girl with bulimia, and in my desperation to be accepted by my family, purging seemed like the perfect solution. I continued purging a few times a week for the next two years. Then one day, a classmate overheard me in the bathroom. She told our school guidance counselor, who told my parents, and they took me to a psychologist near where we lived in Brooklyn.

I was angry, but a part of me felt relieved—maybe she would know how to help me find some respite from this exhausting cycle. Maybe she could help my family understand that I was lovable, even though I lived in a bigger body.

If my therapist had diagnosed me correctly, would things have had to get so dire before I finally got help?

Instead, she looked my body up and down, raising her eyebrows as I shamefully told her that I was making myself vomit. "It sounds like your problem is binge-eating," she told me. "I understand, I was teased for my weight too when I was a kid." I had finally told the truth about my eating disorder to a medical professional—and she ignored the fact that I was making myself throw up, because I didn't look like someone who would do that, or at least, not "successfully."

You might be thinking: Binging? Purging? What's the difference? But recognizing and treating the specific behaviors of someone's eating disorder is crucial to their recovery. By not diagnosing me properly, this therapist taught me something that would be reinforced over the next 21 years of my eating disorder: that restricting and purging are only concerning if you "look" like someone with an eating disorder, which in our culture usually means an emaciated white woman. And she confirmed my belief that my behaviors weren't all that problematic—what really mattered above all was making myself thin.

This was wrong and dangerous on many levels. Purging can lead to electrolyte imbalances, heart attacks, esophageal tears, ulcers, and other life-threatening problems. Over the next few years, I would go on to develop gastritis (inflammation of the stomach lining) and acid reflux from my chronic purging. I also tore my esophagus and my potassium levels dropped, both of which can be deadly.

After that first appointment, I overheard the psychologist telling my mom not to be concerned about my purging. If it didn't matter to my therapist, then it couldn't have been that big a deal, right? My mom agreed with the doctor that the purging probably wasn't happening—so I learned that day never to bring it up again. But I kept purging. And it escalated. This is the most dangerous part about misdiagnosing an eating disorder: The longer eating disorder behaviors go untreated, the worse your treatment prognosis becomes. Eating disorders have the second highest mortality rate of any mental illness, so early intervention is essential.

I continued seeing this therapist for two more years, never mentioning my continued purging. Her first suggestion was for me to keep track of my intake with a food diary so I could see just how much I was eating. When I didn't do that because of the shame I felt about my behavior, she told me that I must not want to get better—instead of exploring and working through that intense shame with me.

Her next piece of advice was to cut out every single food group besides protein, which she (wrongly) claimed would stop my bingeing. So the more I tried to follow her advice, the more I ended up trapped in a vicious cycle that left me hopeless. I was a child with an eating disorder. This psychologist was trained to treat my disorder, but she had no degree or expertise in nutrition. And she prescribed to me the very behaviors that she would probably recognize as horrifying and dangerous in a thin patient.

Anorexia remains the only mental health condition with a weight requirement

When I couldn't follow the psychologist's restrictive eating plan, she told me again that I was rejecting her help because I didn't want to recover. The shame I felt about my body and behaviors around food only intensified. I didn't understand why I couldn't just "be strong" and control my bingeing and purging. I assumed I was broken and bad, and that something was very wrong with me.

By the time I was 14, my purging had escalated to the point that my family could no longer deny it was happening. I remember sitting at a long Passover dinner, eating every course and then excusing myself to go to the bathroom and purge it. At my next therapy appointment, my mom reported this to the psychologist, who looked at me in shock and asked why I hadn't told her what was going on. I shrugged and mumbled an apology. I didn't know how to say that I had tried to tell her almost two years before—she just didn't believe me. And now that everyone knew, it didn't seem to matter. My psychologist asked me to tell her more about my purging, but she still encouraged me to restrict my intake of non-protein foods just as much as before.

A few weeks later, I tried to kill myself. I ended up in an eating disorder hospital, and was finally given the correct diagnosis of bulimia. There were a lot of factors that contributed to my suicide attempt—but looking back, I often wonder: If my therapist had diagnosed me correctly, would things have had to get so dire before I finally got help?

I wish I could say that after those four long years, I finally got the help I needed and started my road to recovery. Instead, I found myself bouncing between treatment programs, struggling to find one that wouldn't cause me further harm. And then, as often happens with long-term eating disorders, my behaviors shifted—this time to severe restriction. Midway through college, I'd mostly stopped binge-eating and started restricting and purging my food intake until I'd lost a third of my body weight in just a few months.

This led to my second misdiagnosis: Because even though I was eating a dangerously low number of calories per day and losing weight rapidly, nobody would change my diagnosis from bulimia (a disorder where patients primarily binge and purge) to anorexia (a disorder where patients primarily restrict, although purging can be present as well). Why not? Because I was still in the "normal" range of the Body Mass Index scale. Technically, to be diagnosed with anorexia, you have to have an underweight BMI, while bulimia and other eating disorders can be diagnosed at any weight.

Although many researchers and advocates are pushing for the diagnostic criteria to change, anorexia remains the only mental health condition with a weight requirement. Ironically, once I stopped bingeing, my treatment teams focused almost exclusively on trying to stop my purging—but ignored the underlying dieting and restrictive behaviors that continues to trigger all of my disordered behaviors. In fact, eating full, nourishing meals regularly is the only thing that quiets my need to purge. But because I wasn't the body size that's associated with eating disorders, I was often given calorie-restricted meal plans and allowed to continue exercising.

This is the most dangerous part about misdiagnosing an eating disorder: The longer eating disorder behaviors go untreated, the worse your treatment prognosis becomes.

So the cycle continued. I spent my 20s continuing to struggle with restricting and purging, often in denial about how bad it was. At the same time, I finished graduate school and started my own career as a therapist, which helped me finally see the degree to which my earlier treatment underserved me. I also discovered the Health at Every Size paradigm, which encourages people to separate weight from health. This made me realize that I needed to seek out health care providers who worked from that framework so I would not be further harmed.

It wasn't until two years ago—over 20 years into my eating disorder—that I finally found a treatment team determined to help me recover into the bigger body I'm meant to have. They know that my recovery depends on healing the restrictive mind-set I've had around food since childhood. I'm working every day on knowing it, too.

If you are struggling with disordered eating or an eating disorder and having a hard time accessing help because of the size of your body, I am so sorry that our system is failing you. The severity of your eating disorder has nothing to do with the size of your body! You deserve so much better and your suffering matters. I'd encourage you to seek out a Health at Every Size clinician, because you deserve to get the help you need to feel safe in your body—and you deserve to feel at peace with food.

Shira Rosenbluth, LCSW, is a licensed clinical social worker in New York City. She has a passion for helping people feel their best in their body at any size and specializes in the treatment of disordered eating, eating disorders, and body image dissatisfaction using a weight-neutral approach. She's also the author of The Shira Rose, a popular body positive style blog. You can find her on Instagram.

If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.

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