Why You Need to Take an EDNOS Diagnosis Seriously
Why an EDNOS diagnosis is more alarming than you think
Posted May 30, 2011
It wasn't always so, but the average family doctor is increasingly aware that eating disorders are a psychological illness, often a coping mechanism in the face of overwhelming stress, emotional pain, trauma or low self-esteem. Physicians recognize that anorexia, bulimia and binge eating disorders can have serious physical consequences and are quicker to recommend treatment. Diagnostic criteria for anorexia and bulimia are clear-cut, and there's a good chance that when patients are diagnosed early and seek care from an eating disorders specialist, their health will improve.
But the vast majority of eating disorders cases, somewhere between 50 and 70 percent, fall in the gray zone of the EDNOS diagnosis, or Eating Disorder Not Otherwise Specified. Yes, it's a terrible name, and not nearly as easy to grasp as "anorexia" or "bulimia." Some examples of EDNOS sufferers are the woman who meets all the diagnostic criteria for anorexia but still gets her period, the person with symptoms of bulimia whose weight is normal, or the individual who binges only once instead of three times a week. In 1994 EDNOS was added to the latest version of the bible of mental disorders, the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV. It is a somewhat fuzzily defined condition, and is particularly common among adolescents, whose behaviors are not as dire or entrenched as those of older patients.
The problem is that all too often EDNOS patients are not taken seriously by their physicians. Psychologist and eating disorders specialist Dr. Margo Maine calls EDNOS sufferers the "forgotten stepchildren" of the eating disorders world.
As parents, it's important to take this diagnosis seriously-don't assume that your child's problem is insignificant and doesn't need treatment. An EDNOS patient can be in as much physical danger as the classic anorexic or bulimic, and suffer just as much emotional distress. In many patients, you might see poorer outcomes and higher mortality rates than in those with full-blown disorders, in part because of the lack of seriousness with which EDNOS patients are treated.
Where she runs into problems, says Marcia, "is when the patient needs to ask for ‘extra-contractual benefits,' meaning when I have to make a case with the insurance company that the patient deserves coverage above what her policy allows." In Marcia's New England region most policies only cover three nutritional counseling visits per year, no matter what the diagnosis. One positive trend, says Marcia, is that more and more insurance companies are allowing unlimited nutrition visits when she makes a good case for a patient suffering from anorexia or bulimia. Not so positive is that this year, she notes, "I am finding that unless the patient is underweight, my request is denied." This approach rules out coverage for a good portion of EDNOS patients.
The next version of the DSM, the DSM-V, is now in the planning stages, and a more refined definition of EDNOS is now being drafted. Stay tuned for Marcia's blog post on how the DSM-V definition of EDNOS seems to be shaping up.
Marcia Herrin and Nancy Matsumoto are co-authors of The Parent's Guide to Eating Disorders. Marcia is the author of Nutrition Counseling in the Treatment of Eating Disorders