By: Sarah Van De Weert
When I talk to people about my eating disorder, I usually just refer to it as an eating disorder; I never talk in diagnostic terms about it. I never come right out and say that my diagnosis is Eating Disorder Not Otherwise Specified (EDNOS). This is usually for two reasons–the first is that most people have never heard of EDNOS and I don’t want to explain it and the second is that I feel like people won’t take me seriously because EDNOS “isn’t a serious eating disorder.” I mean, I have a hard enough time taking it as a serious ED diagnosis, so why would my friends and family, who have a more limited knowledge of eating disorders and are more influenced by stigma?
There is stigma, even in the ED community, even among sufferers themselves, surrounding EDNOS. For me, the stigma makes me feel like “I’m not really sick” because “I don’t have a legitimate eating disorder.” It 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. I mean, in school, we just learned about anorexia and bulimia, so to me, those were the only “real eating disorders.” But I wasn’t diagnosed with either of those, so therefore, I am fine, right? I don’t have an ED?
According to the National Association for Anorexia and Associated Disorders, the mortality rate for ED sufferers diagnosed with EDNOS is 5.2 percent, which is higher than the mortality rates of both anorexia and bulimia. The Center for Eating Disorders at Shepherd Pratt states that approximately half of all cases in eating disorder treatment centers fall under a diagnosis of EDNOS. A diagnosis of EDNOS captures a wide category of symptoms such as sub-clinical anorexia or bulimia, a mixture of both anorexia or bulimia, or atypical eating behavior not characterized by anorexia or bulimia. The Center for Eating Disorders at Shepherd Pratt also cites several studies that have shown that individuals with EDNOS experience eating pathology and medical consequences just as, if not more, severe than those with a diagnosis of anorexia nervosa or bulimia nervosa.
I can read the facts. I can memorize them and spit them out when others talk about anorexia and bulimia as being the only eating disorders that exist. I can validate EDNOS in other people because I can see just how disordered their behavior is, but when it comes to me, it doesn’t seem like a real ED.
But the thing is that it is a very real eating disorder. If you look at the numbers, it is estimated that 24 million Americans suffer from some kind of eating disorder and if you take into account that approximately half of those are diagnosed with EDNOS, you have 12 million Americans who suffer from EDNOS, and of those people, 624,000 will die from a complication related to EDNOS. That is a whole lot of people suffering from and dying from a disease that is perceived as less severe than anorexia or bulimia. This stigma not only prevents people from getting much needed professional help, but it prevents insurance companies from providing adequate coverage for treatment because they, too, think EDNOS is a less severe eating disorder.
The truth of the matter is that it is not. EDNOS is an eating disorder that affects millions of people and kills thousands of people. EDNOS can have the same medical consequences as anorexia or bulimia. EDNOS is a dangerous eating disorder and people who suffer from it are not “less sick” than those with anorexia or bulimia and their eating disorder is not “less severe.” All eating disorders are real. All eating disorders are serious, whether it is anorexia, bulimia, binge eating disorder, or EDNOS. Every eating disorder diagnosis is valid and deserves treatment by knowledgeable professionals.
But something that matters even more than that is that we are all more than our disorders and diagnoses. I am not defined by my eating disorder or any other mental illness. I am so much more. At the end of the day, it does not matter what diagnosis is in my file—it matters that I woke up in the morning and chose recovery for myself. Because regardless of diagnosis, recovery is possible!
Author’s Note: The DSM-V has renamed EDNOS as Other Specified Feeding or Eating Disorder (OSFED). For more information about this change, see this article (http://www.jennischaefer.com/blog/eating-and-body-image/goodbye-ednos-hello-osfed-subthreshold-and-atypical-eating-disorders-in-dsm-5/) by Dr. Jenny Thomas, co-author with Jenni Schaefer of Almost Anorexic.