Not Sick Enough?

BY: Rachel Guerra

DATE: December 4, 2015

We can all think of a time in our lives when we felt like we were not good enough. Sometimes we hold ourselves to unrealistic standards or we internalize the criticisms of others. But can you think of a time when you were not bad enough? The only examples that come to my mind are inconsequential, such as deciding that a skinned knee was not bad enough for a Band-Aid. However, for individuals with eating disorders, this kind of thinking is much more serious because it can have life-threatening consequences.

One population is particularly susceptible to the “not bad enough” thinking trap: individuals diagnosed with Other Specified Feeding and Eating Disorders (OSFED), formerly known as Eating Disorders Not Otherwise Specified (EDNOS). OSFED is described as “a feeding or eating disorder that causes significant distress or impairment, but does not meet the criteria for another feeding or eating disorder.”1 Because the criteria for anorexia nervosa, binge-eating disorder, and bulimia nervosa have frequency and duration “criteria”, many individuals with an extremely unhealthy and dangerous relationship to food and/or exercise fall under the OSFED category.

Too many individuals with this diagnosis believe they are not sick enough to deserve treatment. Stigma leads people to believe that OSFED is not a legitimate eating disorder, which hinders both treatment seeking and potentially insurance coverage. Alyssa Sheinmei, author of The Stone Girl, describes this experience in an article entitled “My ‘In-Between’ Eating Disorder”:

“I read every book and article about eating disorders and I never saw a girl who looked like me; I didn’t have the right symptoms, didn’t fit any of the molds. I was jealous of those girls with real eating disorders; I tried to be like them, I wanted to be like them. […] There is a pernicious notion that there’s a ‘right’ way to have an eating disorder. I believed it too. […] I would have been ashamed to call myself sick; I didn’t deserve to say that I had an eating disorder.”2

In an article entitled “EDNOS is a Real Eating Disorder, Too,” Sarah Van De Weert echoes these sentiments:

“[The stigma] drove me to feeling like I needed to become ‘sicker’—in other words have a diagnosis of anorexia or bulimia—in order to justify being in treatment. I have never felt that my diagnosis was valid.”3

Unfortunately, Sheinmei’s and Van De Weert’s experiences are not uncommon in the eating disorder community. Many individuals with OSFED find themselves taken less seriously by their family, friends, and physicians. Dr. Margo Maine said that OSFED patients feel like “the ‘forgotten stepchildren” of the eating disorder world.4 What can we do to change this misperception? Educate yourself and those around you. A good place to start is the National Eating Disorders Association (NEDA) website, which sheds light on the urgency of eating disorder treatment. OSFED has a striking mortality rate of 5.2%. Compare this percentage with the 4% and 3.9% mortality rates for AN and BN, respectively, and it is clear that an OSFED diagnosis is something to be taken very seriously.5

The more familiar we all become with OSFED, the more likely those suffering will be able to identify their own symptoms and consider reaching out for support and treatment. To those with an OSFED diagnosis who feel that they are not bad enough or sick enough, consider these words Sheinmei eventually believed: “I had an eating disorder. It’s not a title I had to earn, it’s simply the truth.”2

A diagnosis is simply a shared language and allows providers to communicate with each other efficiently. But the truth is that variations on the themes are more common than the prototypic pictures of anorexia nervosa, bulimia nervosa, and binge-eating disorder. If you are struggling with an eating disorder, no matter what the diagnostic details, you deserve understanding and treatment.