EDNOS: The Eating Disorder You Haven’t Heard Of

When I received the diagnosis of Eating Disorder Not Otherwise Specified two years ago, I had a very mixed reaction. On the one hand, the label didn’t seem to fit. Me? With an eating disorder? I wasn’t underweight, and in fact was technically on the edge of being overweight. I had intentionally thrown up from time to time, but certainly was not bulimic. I had tried starving myself periodically in an attempt to get my weight under control, but I definitely wasn’t anorexic. At the most I considered myself a chronic dieter, or someone who at times could be a little obsessed with healthy eating and exercise. I could agree that my eating was very disordered but to identify myself as someone with an eating disorder made me squirm in my seat a bit. (For more on the differences between disorders and disordered eating, read Disordered Eating or Eating Disorder?)

On the other hand, after hearing my therapist tell me I had an eating disorder, I felt relief. After all, I was there to get help, and if I could label my problem, perhaps the solution would come more easily. I was ready to silence the voice in my head that made me obsess over my body and food 24 hours a day 7 days a week, and if giving that voice the name ED (for Eating Disorder) would help, I was willing to accept it.

National Eating Disorder Awareness Week is February 21-27 this year, which seems like a good opportunity to bring attention to this lesser known sibling of Anorexia and Bulimia. Everyone knows about Anorexia and Bulimia, but EDNOS, which has only recently begun to receive recognition in the mental health community can be as equally dangerous and life consuming as its better known counterparts.

So what does Eating Disorder Not Otherwise Specified mean? Well, the short answer is a “category [of] disorders of eating that do not meet the criteria of a specific eating disorder,” according to the most recently updated version of the Diagnostic and Statistical Manual. Ultimately, the definition is more anecdotal which explains why it is often harder to identify, though according to the publication Eating Disorders: The Journal of Treatment and Prevention, 50 percent of individuals who present for treatment of an eating disorder receive the diagnosis of EDNOS which effects 4 to 6 percent of the general population.*

While many of the criteria for EDNOS may closely mimic anorexia or bulimia, some behaviors are less obvious, and in fact, within our diet and body-obsessed culture, can appear perfectly normal. What may look to an outsider as just another diet involving close monitoring of caloric intake as well as exercise, may in fact become — if not already — an unhealthy and unnatural way to control weight based on an intense drive to be thin combined with an unrealistic body image. On the flip side, EDNOS also includes the sub-category of Binge Eating Disorder (BED) which is often overlooked as a simple lack of willpower and/or self control. Regardless of wherever a patient lies in the spectrum of EDNOS, it is important to realize that the emotional trauma suffered as a result of the disorder is equal to that of Anorexia and Bulimia, and should not be seen as anything less than a serious illness.

The introduction of EDNOS as an accepted diagnosis “gives a voice to sufferers who don’t fit into the narrow diagnostic categories of Anorexia, Bulimia, and Binge Eating Disorder” said Shannon Cutts, author of ANA: How to Outsmart Your Eating Disorder and Take Your Life Back, and founder of Mentor Connect, a community of people in recovery from eating and related disorders.

Cutts, who herself suffered from Anorexia, Bulimia and EDNOS feels grateful for the recognition of EDNOS, and encourages sufferers to seek help. “If you know that your symptoms, thoughts, and behaviors are affecting your quality of life, then you both need and deserve help. Use your voice and ask for help. Do not assume you are the only one who “doesn’t fit” into a category and therefore you don’t deserve help. There are many people who suffer from EDNOS and you help not just yourself but everyone who suffers from it when you demand the care you deserve. Search out a medical professional who is familiar with eating disorders rather than struggling to educate an unsympathetic doctor or therapist. Be your own health care advocate. You know better than anyone else when you are struggling and need help. Eating disorders kill, and just because your symptoms don’t fall into the three most commonly-recognized categories does not mean they are not equally deadly.”

The health complications that arise from eating disorders are extensive, and include low blood pressure, slower heart rate, a decrease in bone density, a disruption in hormones, sometimes leading to infertility, and more. Even more alarming is the fact that eating disorders have the highest rate of death among any mental disorder — just one episode of bingeing and purging can cause an electrolyte imbalance causing sudden death. That is why it is so important to recognize that eating disorders come in all shapes and sizes, and present themselves in a variety of ways.

Is there treatment for EDNOS? Though whole rehabilitation centers have risen to address the problems specific to Anorexia, Bulimia, and even Binge Eating Disorder, there is help for other non specified eating disorders. The effort to overcome any eating disorder is extensive and should not be downplayed. Most of the times, the help of a mental health professional is necessary, and the journey through recovery is never quick and painless. But when you consider the alternative of living a life plagued by self loathing, fear of food, and serious health risks, including a premature death, the effort is one that must be undertaken to break free and live a full and happy life.

As for my own journey, to be honest, it’s an ongoing process. Sometimes it’s two steps forward, one step back. But as Jenni Schaefer, author of Life Without Ed, and Goodbye Ed, Hello Me likes to say, fall down seven times, stand up eight.