EDNOS: Most Misunderstood Eating Disorder Also Kills

What is the most prevalent eating disorder that most people have never heard of?  Eating Disorder Not Otherwise Specified (EDNOS) is the catchall, eating disorders grab-bag category for those who do not fit the traditional criteria for anorexia or bulimia. What eating disorder research has revealed is that an individual who does not meet the established criteria for anorexia or bulimia is not exactly in the clear. Mental illness is still what is driving the disordered eating, compulsive exercise patterns, destructive behaviors and severely negative body image. EDNOS becomes the default diagnosis. EDNOS accounts for approximately 70 percent of eating disorder diagnoses. Yet the prevalence of EDNOS sufferers does not make the issue any easier to grasp or to treat. Such a nebulous classification, rather than providing clarification or a path to treatment, can leave sufferers confused. For many, it may contribute to denial around their disordered eating. The individual who escapes the anorexia or bulimia diagnosis may be tempted to think all is well. This is often not the case. Many of the mental illness issues and thought patterns that underlie and motivate anorexia and bulimia are found in those who suffer from EDNOS. Though their symptoms don’t place them cleanly in one category or the other, they experience many of the same controlling beliefs, self-hatred, fear and perfectionism. A patient might meet behavioral criteria for a particular eating disorder classification, but not weight criteria. He or she may binge and purge, but perhaps not enough times in a month or for enough months in a row to fully qualify as bulimic. The behaviors are no less disturbing or harmful, yet they resist diagnosis given current diagnostic criteria. However, though the eating disorder isn’t “full anorexia” or “full bulimia,” it is no less serious. More people die prematurely from EDNOS than any other eating disorder. What makes it especially dangerous is that it is hard to classify and as a result, hard to treat. Sufferers can present any multitude of disordered eating patterns and can, in practicing them, do grave damage to their health. An eating disorder sufferer who falls into the EDNOS category may receive several varying and even contradictory diagnoses. This is partially due to lack of understanding of the disorder within the medical and psychiatric communities. But another factor is the ever-morphing quality of EDNOS; the disease does not always stay in one place. An EDNOS sufferer may go through periods of anorexia, bulimia, binge-eating disorder or other unspecified disordered eating and exercise patterns. A diagnosis, as well as a proper and consistent approach to the treatment of a highly inconsistent disease, can be elusive. A greater understanding of this particular illness is essential to better and more effective eating disorder recovery. Many, because they don’t fit an established category, are denied the treatment they need. However, EDNOS, unaddressed, can escalate to a more defined eating disorder condition over time. Like anorexia, EDNOS often affects athletes or other individuals who must maintain a particular body weight or composition. The motivator is not always weight loss, but negative body image will necessarily be a main factor in the equation. Affecting both men and women, EDNOS represents a series of unhealthy relationships with the body, food and exercise. It can involve compulsive exercise after an injury or to make a spot on a competitive sports team, compulsive weight lifting, highly rigid eating patterns or strict food ideologies. For example, orthorexia, or the obsession with healthy, “clean” eating would also fall under the EDNOS umbrella. At their emotional core, eating disorders (EDNOS included) manifest from a deep need to control food and exercise because other areas of life feel out of control. These are the same motivating elements behind all eating disorders. The fact that EDNOS is hard to identify, describe, diagnose and treat effectively makes it all the more dangerous. It is not a milder version of an eating disorder; it can be even more fatal because it escapes notice. According to the National Eating Disorders Association criteria for EDNOS include the following:

  • Menstruation is still occurring despite meeting all other criteria for anorexia nervosa.
  • All conditions are present to qualify for anorexia nervosa except the individual’s current weight is in the normal range or above.
  • Purging or other compensatory behaviors are not occurring at a frequency less than the strict criteria for bulimia nervosa.
  • Purging without binging—sometimes known as purging disorder.
  • Chewing and spitting out large amounts of food 

The commonality in all of these conditions is the serious emotional and psychological suffering and/or serious problems in areas of work, school or relationships. If something does not seem right, but your experience does not fall into a clear category, you still deserve attention.

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