EDNOS: The Eating Disorder You Haven’t Heard Of

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Editor’s note: Under the recently released DSM-V (2013) EDNOS is now categorized as OSFED (Other Specified Feeding and Eating Disorder). See the National Eating Disorders Association for additional information

By Michelle Cantrell of VenusVision.com

When I received the diagnosis of Eating Disorder Not Otherwise Specified (EDNOS) two years ago, I had mixed reactions. 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 20-26 in 2011, which is 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 of Mental Disorders (DSM-IV). Ultimately, the definition is more anecdotal, which explains why it is often harder to identify; however, according to the publication Eating Disorders: The Journal of Treatment and Prevention, 50% of individuals who present for eating disorder treatment receive the diagnosis of EDNOS, which affects 4 to 6% of the general population.[1]

Although 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 and 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. Regardless of where 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 that sometimes leads 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 that may lead to 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 BED, 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, 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.”

Michelle owns and operates VenusVision.com, which encourages women to be the best they can be. She has written for US Airways and I Am Modern magazines. Michelle is working on her first novel, which follows the yo-yo dieting and mommy adventures of a suburban housewife. She lives in northern Virginia with her husband, two daughters, a Lab, and a ball python. When not writing or enjoying family time, she enjoys travel, good food, and wine.

Additional Resources:

Remuda Ranch

The Renfrew Center

EatingDisordersOnline.com

Related content:

Discrimination and EDNOS: One Woman’s Story

Expressing Disorder: Art Therapies for Eating Disorder Treatment

Celebrating Eating Disorder Recovery: Inaugural NEDA Walk in Texas

Study: Black Girls 50% More Likely to be Bulimic than Whites

Multicultural Women & Body Image

You Don’t Have to Have an Eating Disorder to be Image Obsessed


[1] Cited from the web site Disordered Eating.

 

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Comments

  1. So many girls and women have EDNOS. I have been able to diagnose myself with EDNOS, and the social and psychological ramifications are extreme! Glad to read this article, and hope the message gets out.

  2. its so important to give EDNOS the attention it deserves. After my medical doctor telling me I didnt have an eating disorder, but disordered eating, I lived in the dark of my own personal hell for about five more years before I finally recovered. Just because one doesn’t fit into the classic textbook cases of bulimia or anorexia doesn’t mean they they deserve to get help.

  3. tttttttttttyyttytt says:

    Recently Tyra Banks had a girl on her show who was using the trick of eating tons of baby powder to try and lose weight. Because the girl was a normal weight to maybe somewhat overweight, Tyra proclaimed, “you don’t have an eating disorder! You have disordered eating!” with a satisfied look on her face, yet more proof of the denial, grandiosity and narcissism of not just TV hosts but even people in the so called helping professions. I have ED NOS and I have binged, purged, starved, been thin, been fat, been normal, been to hospitals/treatment 10 times and almost died and had the EMT go, why’d you go and do a thing like overdose on laxatives? The attitude toward all eating disorders boggles my mind but this EDNOS needs some awareness. You can be starving all the time but if you’re for whatever reason not fitting the weight criteria for anorexia you’re class’d as EDNOS. Most of the girls on pro ana sites are probably ednos.

  4. BED is real. Thank you for recognizing it.

  5. Thankyou for this article. I also have EDNOS, and can relate to the other definition- Eating Disorder Neglectfully Oversimplified. A greater understanding and appriciation of the difficulties that EDNOS suffers face would be wonderful!

    xxx

  6. Thank you Adelaide and Kath for your comments. Kath, that’s the whole reason I wanted to talk about EDNOS — to inform people that eating disorders come in all shapes and sizes, even the more well known ones like bulimia. In fact, Jenni Schaefer, whom I refer to in the post and whom has been of great inspiration to me, says that although at one point she was extremely thin due to her anorexia, and did raise concern among those closest to her, it was actually when she was at her heaviest when her eating disorder was at its worst because that’s when she had turned to bulimia which raged in full force. But of course, by then, she ‘looked’ healthy, compared to when she had lost so much weight.

    As far as I’m concerned, most women could use some kind of help whether they have an undiagnosed eating disorder, or they are more disordered eaters. Almost every woman I know — whether she is short, tall, fat, thin, rich, poor, mother, professional, young, old — spends far too much time obsessing over her body, and what she eats, or just comes to accept the fact that she hates her body, and that’s just normal. But it’s absolutely not normal, and the more time we spend obsessing on these things, the less time we have to enjoy this short life we have on this planet.

  7. Thank you so much for sharing Kath. I understand how painful it can be when others, especially those close to you, do not view you as requiring support because you are fat. As a teen/young woman I battled anorexia and bulimia but those around me only expressed concern when I was very thin. When I was fat (and engaging in destructive bingeing and purging behaviors) friends and family were not concerned, despite their awareness of my unhealthy behaviors. I understand now that their reactions (or lack thereof) were primarily due to not being educated. The vast majority of people do not recognize that serious emotional and physical harm occurs with any eating disorder, regardless of what dress size you wear.

  8. Thank you for this post. I was also diagnosed with EDNOS, a couple of years ago now. Most people don’t believe I’ve suffered an eating disorder. I am fat, therefore it is assumed that I just have a lack of willpower, or I’ve been lying about the binge exercising and starvation diets, and food/exercise/body obsession.

    So often it seems that eating disorders are acceptable if the sufferer is fat. Posts like this one help to break down that assumption.

  9. Great saying this Fall seven times and get up eight.

    And it’s a great perspective on the slips we might make.

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  1. [...] EDNOS: The Eating Disorder You Haven’t Heard Of [...]

  2. [...] I have what is known as an Eating Disorder Not Otherwise Diagnosed (EDNOS). This means that I do not have Anorexia or Bulimia, but another set of behaviors that do not have a [...]

  3. [...] This post was mentioned on Twitter by Michelle Cantrell, Pia Guerrero. Pia Guerrero said: Our latest post explores EDNOS: The lesser known sibling of anorexia and bulimia courtesy of @VenusVision. http://fb.me/NZtAoGiQ [...]