I laughed in her face. How could that be the case, I countered, when my weight was completely normal? I knew all about my past eating disorder (ED); I dealt with it during my late teens and 20s. But I had gained weight over the years due to normal life stuffnatural aging, medicationand my ED behaviors had subsided for chunks of time. So even though I had returned to some of the unhealthy food obsessions, like undereating and overexercising, that plagued my earlier years, I wasnt particularly thin at this point, which made my recent weight loss less obvious. I cant be in the midst of anorexia again, I told myself, and scheduled a standard checkup to prove it.
When the MD entered the room, we got straight down to business. I sat there in my paper gown as she reviewed my health history, which included my hospitalizations for ED several years earlier. Anorexia, hmm? the doc murmured, glancing up from the stack of papers to look me up and down. Clearly, thats not still a problem. My cheeks flushed with shame even as I felt a twinge of satisfaction at hearing an expert confirm that my mom was wrong.
Except, of course, I did still have a problem. My hair was thin and I felt weak and light-headed when I stood upresidual effects, I told myself, of my history. Because the doctor never asked if I was still engaging in any ED behaviors, she took one look at my outward appearance and thought: Case closed. No longer at a low weight, I was fineright? The next several years, during which I micromanaged calories and fretted over gaining, told a very different story. Finally, when a relapse in 2018 left me near cardiac and kidney failure, I checked myself into an eating disorders hospital. There, I learned I was one among millions of people who fall into a diagnostic subcategory called atypical anorexia (which was added to the latest edition of Diagnostic and Statistical Manual of Mental Disorders, a.k.a. the bible of psychiatry). Because we look biggerwe might even qualify as overweight on a medical chartwere often diagnosed later, because doctors dont take us seriously. And despite being heavier, the problems we develop from anorexialow pulse rate and low blood pressure, brittle bones, cardiac and kidney problems, even risk of early deathare just as severe. Yep, identical disorder, same complications, same challengesbut in a different group because our bodies send mixed messages.
A name in the medical books means there are others like methat Im not the only one with this issue who doesnt look the part.
Historically, to get an official diagnosis of anorexia, you had to display harmful eating habits and also be clinically underweight. If you didnt fit the stereotype of the disease, no label for you. As a society were conditioned to view anorexia through the lens of weight, says Lauren Muhlheim, PsyD , a therapist in Los Angeles who specializes in helping people navigate eating disorders.
The irony is that only 0.5 percent of the population has the so-called typical kind of anorexia, while an estimated 2.5 percent of the population is thought to fall into the atypical group, per an Australian study in the Journal of Eating Disorders. (That makes atypical anorexia five times more common.)
To call it atypical is laughable, says Jennifer Gaudiani, MD , a Denver-based physician specializing in eating disorders. Dr. Gaudiani adds that shes seeing more people like me, who have physical signs of an ED (like hair loss and fatigue) but dont fit the anorexia stereotype. And then there are the large number of folks who dont seek medical attention for fear of facing weight biaswhich is part of what kept me away from the doctor after that awful appointment in 2012.
It can fill you with shame, even terror, to reveal a mental disorder like this to a medical professional when you dont think you look sick enough. A therapist once tried to convince me I had binge-eating disorder because I was overweight. And back in my 20s, when I first got treatment and expressed hesitation about gaining, more than one provider assured me they wouldnt let me get fatas if fat were something to fear. Over and over, professionals reinforced stereotypes about EDs when they should have been challenging them.
I still consider myself one of the lucky ones, though. When I checked into the hospital two years ago, at 37, my husband and family rallied around me with unconditional support. I found a treatment center that understood me, and I spent five months there renourishing my body and learning new coping skillslike the Health at Every Size philosophy, a set of principles that taught me how to look after my well-being without pursuing weight loss. Now, I can finally see anorexia in a broader way. A name in the medical books means there are others like methat Im not the only one with this issue who doesnt look the part.
I weigh more today than ever before. But Im coming to terms with the fact that my size is only a tiny part of who I am. In fact, it plays no part at all when it comes to anorexiaand my health.
Think you or someone you know is experiencing an ED? Reach out to the National Eating Disorders Association hotline at 800-931-2237.
This article appears in the May 2020 issue of Womens Health, available April 21. Subscribe now .