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ED-NOS: The Unspoken Diagnosis

Note: For information on Pica or Rumination Disorder, please see other eating disorders by Something Fishy. For information on Body Dysmorphic Disorder and Bigorexia, see the body image page on this website

NEWSFLASH 9/10/03: For years I've lamented about the absence of good books that deal with the subject of ED-NOS; Constance Rhodes has come out with Life Inside the "Thin Cage." Check for it at your local bookstore or online!!!

The term "not otherwise specified" bothers me, but that is how the DSM-IV categorizes it. It's an eating disorder without a name in a way. Basically, the formal diagnosis of "Eating Disorder Not Otherwise Specified" is a catch-all for eating disorders that don't exactly fit the parameters of anorexia or bulimia. It is a very broad category, because it may can mean many things:

Often, people categorized as having ED-NOS are basically anorexic or bulimic, but cannot be classified as such because of a technicality. Obviously, ED-NOS can very easily lead to a diagnosis of one of the two other clinical eating disorders. Some sources point to as many as 50% of eating disorder cases being diagnosed as ED-NOS. I have a feeling that although many of these cases might be better classified as having binge eating disorder, if and when that becomes its own separate diagnosis, it also might indicate that the folks at the American Psychiatric Association needs to rethink the criteria for diagnosis of anorexia and bulimia.

In the meantime, if you mention "ED-NOS" to most laypeople, they will not have a clue what you are talking about. While anorexia and bulimia get all the publicity, people diagnosed as NOS are often left in the shadows. They may look at the criteria for anorexia and bulimia and feel puzzled. They know something is "off" about their eating habits, but feel invalidated because nothing out there tells them that what they have .is in fact an eating disorder. Invalidation, usually unintentional, may also come from family or friends. (The person who has lost fifty pounds by starving themself but is still overweight will more likely get praise from loved ones rather than concern, for example.) Luckily, in this day and age, more sites on the internet are beginning to talk about the "other" eating disorders to bring validation for those who aren't officially bulimic or anorexic. And an author by the name of Constance Rhodes has come out with a book called Inside the "Thin" Cage which deals with chronic dieting and ED-NOS.

A friend of mine once had to go to the emergency room due to complications of her eating disorder. When she told the triage nurse that her diagnosis was ED-NOS, the nurse replied, "Oh, so you don't actually have an eating disorder?" It's bad enough that the general public doesn't know much about this category, but the fact that someone in the medical field has that sort of attitude makes me both angry and sad. Even though ED-NOS may not get quite as much publicity as its more infamous "cousins," it is important to remember that ANY eating disorder has the potential to be lethal. In the long term, it's not the label that matters; it's the PERSON. And a person diagnosed with ED-NOS deserves just as much care, consideration, and support as any other eating disordered patient.

Evan Keraminas

Links specific to ED-NOS:
Something Fishy: ED-NOS Definitions
Atypical eating disorders

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