Isn’t EDNOS a Form of Failure?

By January 28, 2013

I have had problems with my eating since I was 13. I am now 20. I lost ** pounds in two months and since then have put it back to a normal weight, but I go through periods of severe starvation and excessive exersise and can lose weight very quickly. When I relax a little it goes back on. All I see in the mirror is fat and nothing goes in my mouth without me thinking about how many calories are in it and whether I can burn them off or not. According to the Profesionals, my BMI is not low enough to be Anorexic so I would be EDNOS. Isn’t EDNOS just a form of failure? I think I would see this as a failure: I am not strong enough to lose enough weight to be properly anorexic. I know this is not normal, but it has put me off seeking professional help even though I’m sure that is all that can sort me out now. I admit I have a problem. What would the doctor do if I went to see him? There is no proper treatment for EDNOS. I don’t want to be told I do not have a proper eating disorder. Thanks for all your work on the site – I’ve found it really helpful reading some other answers. – Anomynous

Dear Anonymous,

I think writing to Finding Balance is a good first start in dealing with your eating disorder. Admitting that you have a problem is indeed the first step to recovery.

Let me start with the EDNOS diagnosis. Individuals with EDNOS are often more severe in their eating disorder and more difficult to treat than individuals who meet all of the criteria for Anorexia or Bulimia. The Eating Disorder Inventory, Third Edition (EDI-3) is one of the most commonly used assessments of eating disorders. On several EDI-3 scales, individuals diagnosed with EDNOS actually score higher (more severe) than individuals with bulimia and anorexia.

Diagnosing eating disorders is far from an exact science. It isn’t the same as diagnosing a physical problem such as cancer. With physical problems the doctor can order laboratory tests and find tangible evidence that the patient has a specific physical disorder. With eating disorders there isn’t any specific laboratory test or finding.

Let me briefly explain how eating disorder diagnoses are created.

There are two main diagnostic manuals that are used to diagnose various types of eating disorders: in Europe there is the ICD-10 (International Statistical Classification of Diseases, Tenth Version) and in America we use the DSM-IV, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. (The Fifth Edition is scheduled to be released in May, 2013.) These manuals are similar in how they diagnose anorexia and bulimia, but they disagree on the diagnosis somewhat. The criteria for anorexia in Europe are a little more rigid than in America.

How are the criteria for anorexia, bulimia and EDNOS established? Basically, experts and researchers sit down together and debate what should and should not be included as criteria for various eating disorders. The result is almost always a compromise in that debate. For example, the DSM-IV says that in order to be diagnosed anorexia a woman must miss at least three periods (assuming she is not on birth control pills which can start periods in anorexic women). Why three months? Why not two? Why not four? Three months is a compromise and there is nothing overly scientific about the three-month duration. Many experts believe that the criteria about periods should be removed altogether!

That doesn’t mean these experts are simply making it up; they base their decisions on research, but research findings are not always clear, especially when compared to medical diagnoses. Can you image medical doctors debating over what it means to have cancer? Probably not!

Anorexia Nervosa was not even listed in the DSM manuals until the third edition (DSM-III) came out. It is highly likely that the criteria for anorexia, bulimia and EDNOS will change when the fifth edition of the DSM comes out. All of that to say, I would not get hung up on the diagnostic labels; they have changed in the past and will change in the future. An eating disorder that is diagnosed EDNOS today could very well be considered anorexia or bulimia in the future.

Allow me take a moment to discuss your statement that your BMI isn’t low enough to meet criteria for anorexia. The ICD-10, which is what your doctors would use, states that anorexia is at least 15 percent below expected. OK, but how do we know what the expected weight should be for each individual?

The DSM-IV that we use in the United States doesn’t use BMI as an indicator at all! The BMI measurement is far from being an exact measure of the severity of malnutrition. The DSM-IV only uses the weight as the criteria, but even then the individual’s weight is not considered an exact number.

The cutoffs used in these manuals provide only suggested guidelines for the clinician, since it is unreasonable to specify a single standard for minimally normal weight that applies to all individuals of a given age and height. In determining a minimally normal weight, the clinician should consider not only such guidelines, but also the individual’s body build and weight history.

It is best for professionals to look at the bigger picture including the psychological issues – fear of weight gain and severe restricting. For example, someone who might say, “…but I go through periods of severe starvation and excessive exercise.” And we look at issues such as extreme body image issues and distortion. For example, someone who might say, ” All I see in the mirror is fat…”

The NOS in the EDNOS diagnosis stands for “Not Otherwise Specified.” NOS helps define those people with symptoms that do not exactly fit the compromise we’ve come up with in terms of the criteria for a disorder. NOS is not only used with eating disorders, but also with disorders such as depression, anxiety and many other diagnoses in the ICD-10 and DMS-IV.

“I would be EDNOS, but isn’t this just a form of failure?” No, it’s not a failure. First of all there is a belief that anorexics are somehow strong because they can starve themselves to the point of extreme weight loss. That has nothing to do with strength; it has to do with a severe psychological condition that includes genetic issues, biochemical issues and severe psychological problems. Anorexics are not strong because they don’t eat – they are sick.

It is that type of thinking – “that anorexics are strong” – that makes anorexia an attractive lifestyle to some. There is a deep feeling that “I am not special,” “I am not the best at anything,” “I am not strong,” and “I am not worthy” that often fuels anorexia. This is an erroneous thought: “I would be special if I could lose an extreme amount of weight and show everyone how much control I have.” You are not special because of what you do; you are special because of who you are!

I have worked with thousands of individuals with an eating disorder. The ones who are strong are the ones who are willing to admit their problems, seek help and work hard to deal with the severe emotional wounds and pressures in their lives.

I cannot say this strongly enough: you clearly need help. If you find a doctor or therapist who thinks your eating disorder isn’t that bad simply because your BMI is too high, you need to find a new doctor or therapist because that person doesn’t really understand eating disorders. See “Finding Treatment” for more information.

It seems that you have an extreme perfectionistic way of thinking. Did you know that in the genetic studies of anorexia one of the key findings is that perfectionistic thinking is a central part of what is inherited? As with any genetic studies, it doesn’t necessarily mean that your father and/or mother are perfectionistic (although they are more likely than most to be perfectionistic), but you likely have a genetic predisposition to be perfectionistic. Because of cultural issues, you see women who can starve themselves and be perfect. That’s how you define being perfect, so that’s what you try to accomplish – to be perfectly thin.

You need to realize that you have a severe disorder regardless of what label someone puts on it. You need to seek help. Please understand that you need help as much as anyone who “meets all the criteria for anorexia.” I pray you seek and find that help as soon as possible. Blessing to you!

David Wall, PhD