"But you don't look like you have an eating disorder." -- Weight Stigma in Eating Disorder Diagnosis
It's the sentence that haunts anyone struggling to accept the validity of their illness. And it's a sentence that keeps many people with life-threatening illnesses from obtaining access to proper treatment: "But you don't look like you have an eating disorder."
The misconception that eating disorders have a certain "look" is widespread and incredibly dangerous. Most people assume that for someone to have an eating disorder, they must be a young, white female with a sunken face and skeletal frame. And while some eating disorder victims certainly fit this description, the reality is that there is a large population of people who do not. Eating disorders affect people regardless of age, race, gender, or socio-economic status.
In fact, 30-40% of people hospitalized for anorexia nervosa -- the disorder most widely expected to contain the stereotypical emaciated victim -- are of average to above-average weight (Whitelaw 2018).
And I was one of those people.
I didn't believe that I had a problem because I didn't think I "looked" like I had a problem. Never mind the fact that sitting up exhausted me, I was cold if a breeze swept through on an 80 degree day, and my hair thinned by a third of its natural thickness: since I couldn't see my bones, I couldn't have an eating disorder.
The situation was only made worse by the fact that most medically trained professionals don't know the first thing about eating disorders. I remember being at my lowest weight ever, and a doctor told me that I "could stand to lose 10 pounds." He wasn't concerned by the description of my excessive exercise routine, limited food intake, or disordered thoughts. He was only concerned about my weight.
And this is a reality that far too many eating disorder victims face.
Even in the world of eating disorder treatment, weight stigma is present. Insurance companies will stop covering treatment -- or may refuse to ever start -- when someone reaches or begins at a "normal" weight. It's all a numbers game, and it keeps people stuck.
The DSM (a fancy book that practitioners use to diagnose mental health disorders) does not help the situation of weight stigma either. Until recently, there was a weight criteria to be diagnosed with anorexia -- this means that you had to weigh a certain amount or less to receive this diagnosis, even if you met all the behavioral criteria. Even now, with the newest DSM modified to exclude a specific weight requirement for anorexia, one must be a certain percentage below "ideal weight" to receive an anorexia nervosa diagnosis.
This means that even if someone lost a significant amount of weight in a short period of time, unless it meets the criteria for "enough" weight lost, one's diagnosis would be considered atypical anorexia instead of plain old anorexia. And this name is deceiving, because while "atypical" gives off the vibe that this disorder isn't as severe, the health issues -- both physical and mental -- that can come from it are no different than the "normal" version of the disorder. Someone diagnosed with atypical anorexia faces the same risks of anxiety, depression, suicidality, heart problems, and more as someone diagnosed with anorexia (Jocelyn Lebow & Leslie Sim 2017).
And the most ridiculous part of all of this is that weight loss is just one symptom that can occur, it's not the disorder itself. Eating disorders are mental illnesses, not physical ones, yet we heavily use weight to diagnose them.
So next time someone is brave enough to let you into their life and tells you that they have an eating disorder, don't talk about how they look. Don't say "But you look so healthy!" or "I never would have guessed!" or anything along those lines. Because the reality is, that person is probably struggling enough to accept the validity of their illness without you continuing the misconception that an eating disorder has a "look."
If someone told you they were diagnosed as bipolar, you wouldn't say "But you don't look bipolar," so don't do it to someone diagnosed with an eating disorder either.