Am I Really? - Eating Disorders Not Otherwise Specified (ED-NOS)

I didn’t think I had an eating disorder. For a while, I was hyper-fixed on them, because I knew there was something there that resonated with me. I would read about them and compare—anorexia? Sometimes, but I was as likely to binge as starve. So bulimia? But I didn’t throw up, couldn’t imagine it. And definitely not binge eating disorder, since the binges weren’t as significant as I would read and would be followed by periods of restriction. While in graduate school, I was officially diagnosed, with ED-NOS because I had symptoms of both anorexia and bulimia. (Note: ED-NOS has recently been replaced with OSFED or Other Specified Feeding or Eating Disorder. I will use ED-NOS in this post because that is the term that was used in my personal experience.) Two things surprised me at this point. One was that one of the features of bulimia is purging, and while I didn’t make myself throw up, I did exercise excessively, counting the calories burned against the calories consumed. I was surprised when the doctor explained that that is a form of purging. The second thing was that you could have a diagnosis without fitting neatly into one.

Many people have some knowledge of anorexia and bulimia. But eating disorders not otherwise specified (ED-NOS) is actually more common—one study found that in outpatient settings, 60% of eating disorders fall under this category. ED-NOS is typically diagnosed as a person having some symptoms of anorexia or bulimia, but not quite reaching diagnostic level, or a person having mixed symptoms of both disorders. But since NOS diagnosis are typically a “catch-all”, there is no real diagnosis beyond that (ie., “there’s definitely a problem, but beyond that, we’re not quite sure”).

When I first heard of ED-NOS, I assumed this was a “mild” form of eating disorder and barely counted. Yet this same study above also cited others that showed that these ED-NOS patients were just as severe, physically and psychologically, as their better known counterparts. Indeed, to be diagnosed with ED-NOS, the disorder needed to be clinically significant. There were mild cases, but depending on the BMI of the person being diagnosed, a person could also be moderate or severe. (I, who didn’t consider myself that bad, would have been moderate bordering on severe.)

Unfortunately, people with ED-NOS are less likely than those with other disorders to get treatment. This is likely due to above mentioned lack of knowledge around it—I wasn’t diagnosed and didn’t consider myself “bad enough” for almost a decade. This post seeks to bring a flicker of awareness to this lesser known aspect of eating disorders. If eating habits—or exercise, or anything surrounding it—impacts someone’s life, that’s enough to be worth exploring, whether it fits neatly into the traditional diagnoses or not.