Diagnostic Disarray: Implications of the DSM-5 changes to the anorexia diagnosis

As anyone involved in the field of mental health knows, the most recent DSM (the DSM-5) was released in May 2013. Although that was three years ago, people are still adjusting and reacting to the changes. In this blog I will explore this newest edition’s changes for eating disorders, particularly the changes for the anorexia diagnosis. At first this topic may seem a little dull– who the hell cares about the detailed criteria for an eating disorder? Isn’t that stuff only relevant to the doctors and therapists doing the diagnosing? Well, you might think, but I can tell you that for many people with eating disorders, this stuff matters a lot. Too much, probably. . .

But first, a little context for my friends reading this who are in a completely different field and have no idea what this DSM business is– The Diagnostic and Statistical Manual of Mental Disorders is a large book published by the American Psychiatric Association that is used by various professionals (e.g., therapists, psychiatrists, researchers, insurance companies) to guide them in diagnosing and understanding mental disorders. This is the standard manual used for mental disorders in the United States, but other parts of the world tend to use another manual called the ICD-10, which covers not only mental health conditions but physical conditions as well.

The previous DSM-IV-TR listed three main eating disorder diagnoses– Anorexia Nervosa, Bulimia Nervosa, and Eating Disorder- Not Otherwise Specified (ED-NOS). When an individual’s symptoms did not fit into the criteria of the anorexia or bulimia diagnoses, that individual was given the ED-NOS label. The new DSM-5 added five diagnoses to the eating disorder chapter (now called “Feeding and Eating Disorders” abbreviated “FED”– how clever). Now, in addition to anorexia and bulimia there is Pica, Rumination Disorder, Avoidant/Restrictive Food Intake Disorder (AFRID), Binge Eating Disorder (BED), and two “umbrella” diagnoses– Other Specified Feeding or Eating Disorder (OSFED) and Unspecified Feeding or Eating Disorder (UFED).

Another major revision to the eating disorders chapter was relaxing the criteria for both the anorexia and bulimia diagnoses. An individual can now be diagnosed with bulimia while having fewer binge/purge episodes per week and having these symptoms for a shorter length of time. Similarly, an individual can be diagnosed with anorexia without meeting any kind of specific weight criteria. One of the biggest implications of these changes is that more people can now be diagnosed with either anorexia or bulimia, which a lot of people consider to be the two “major” eating disorders. Before, about half of all individuals diagnosed with eating disorders were given the ED-NOS label, which insurance companies did not always take as seriously (and therefore were less likely to cover treatment for). For this reason, many people were quite thrilled about these changes. The thought was, the more people diagnosed with the “serious” eating disorders, the more people would be able to access treatment. Yay! Life is fair again! Everyone’s going to get better now!

Except… not so much. I saw problems with some of these changes before the DSM-5 was even released, and I know I’m not the only one. First of all, if the problem is that people were being denied treatment because they weren’t being diagnosed with the “serious” eating disorders, the solution should not be relaxing the criteria of those disorders. The solution should be to fix society’s messed up notion that only certain disorders are worthy of treatment. I have no brilliant ideas on how to do this, but it seems completely counter-productive to start rearranging things so that people can now be classified as having anorexia or bulimia so that doctors (or insurance companies, or who/whatever) take them seriously. Isn’t that letting them win?

Eating disorders are perhaps a unique category of mental disorders in that the sufferers themselves are often very emotionally invested in their given diagnoses. I don’t believe there is any other family of disorders where people are so personally tied up in their specific diagnosis. Of course this is not always the case, and it has certainly become more common as information has become readily available on the internet (i.e., before you could easily google “diagnostic criteria for anorexia” most people probably had no idea what the actual criteria were, or that criteria even existed).

There is an unspoken belief system around the “hierarchy of eating disorders” that is probably going to come off as very strange to anyone who has never dealt with an eating disorder. I don’t want anyone to get the wrong impression here. All eating disorders can and do lead to miserable existences, and what I’m about to say should not be taken to mean that people actually want any eating disorder. Yes, “pro-anorexia” is a thing, but the majority of those people either do not have real eating disorders (and never will) or are in the very early stages when the allure of such a “lifestyle” is still novel and enticing. Once they fall a little deeper into the disorder I can guarantee you they will no longer find it cool or desirable. That said, people often remain very attached to their given diagnosis, believing it to reveal more about them as a person than it was ever meant to reveal.

Anorexia has long been seen as the most “desirable” eating disorder. If you’re going to have an eating disorder, it damn well better be anorexia because at least that means you are (a) thin, (b) in control, and (c) taken seriously. Bulimia is often considered the disorder for the “failed anorexics” who could not keep up with the pace of behaviors needed to lose weight or remain underweight. ED-NOS is the disorder you were given if you weren’t thin enough to be anorexic or did things like (gasp!) binge without purging.

Maybe an anecdote will help here:

I once really took it to heart when a doctor recorded my diagnosis as bulimia when my diagnosis was actually anorexia- binge/purge type. I know, the horror! At the time I was well below the 85%/17.5 BMI “cutoff” for anorexia and assumed this mistake in diagnosis meant I really did have an unfortunately proportioned body that makes me appear way larger than my weight would suggest, which has always been my “disordered” (according to the professionals) belief. I spent an entire therapy session crying about this until I finally accepted her alternative explanation. It wasn’t that this doctor thought I looked overweight, or could not recognize that I was quite underweight, but that she was a primary care physician who had no experience diagnosing eating disorders or anything out of the DSM. She probably just heard “eating disorder” and “binge/purge” and immediately thought “bulimia.” I saw her for all of five minutes. It’s likely she had no idea that individuals who binge/purge but are underweight get diagnosed with anorexia- b/p type or even that different sub-types of anorexia exist. Hell, I’ve even come across eating disorder “specialists” who are unclear on this.

Does this all sound crazy? It should because it is, although I’m not sure who is really to blame here. How did we become so obsessed with diagnoses? Why are some seen as superior to others? Are there other families of disorders that have this same kind of “hierarchy?” (I’m truly curious to hear people’s thoughts on this. . .)

But back to the point of this blog– I want to look specifically at the changes to the anorexia diagnosis that came with the DSM-5. The previous DSM listed four major criteria, plus divided the disorder into two sub-types. To summarize, a person had to show the following:

(A) Refusal to maintain a “normal” body weight (defined as less than 85% of the “expected” weight for age/height, or below a BMI of 17.5)
(B) An intense fear of gaining weight or becoming fat, even when underweight
(C) A disturbance in how one sees her/his own body, and “undue influence” placed on the importance of body size
(D) For postmenarcheal females, amenorrhea (an absence of at least three periods)
(E) And finally, one was classified as having either “restricting type” or “binge/purging type” (because yes, contrary to popular belief, many people with anorexia who are underweight do binge/purge)

The DSM-5 made several notable changes to these criteria. First, the focus was turned to behavior rather than attitudes, by changing the wording in criterion B to “persistent behavior that interferes with weight gain” and removing the word “refusal” from criterion A. I like both of these changes. I always thought the word “refusal” was a little strong, and falsely made the disorder out to be one of choice. Also, for some, anorexia really isn’t about a fear of being “fat,” but rather an unexplainable compulsion to eat in a way that prevents them from maintaining a normal weight. The DSM-5 also removed the amenorrhea criteria, which I also support, as there have been documented cases of females continuing to menstruate even at emaciated BMIs.

The change I have a problem with is the removal of the weight criteria for a diagnosis of anorexia. The DSM-5 removed the 85% marker and replaced it with the very vague “significantly low body weight.” At first, this seemed like a welcome change. I mean, who’s to say someone at 86% of their expected body weight is any less sick or anorexic than someone at 84 or 85%? And who determines what “expected body weight” really is anyway? Certainly there are people who naturally settle at higher or lower weights than others. And certainly, a person who drops 40 lbs in a few months by restricting to 600 calories a day while excessively exercising and purging has a problem, even if their weight is still in a “normal” range. Medical and psychological consequences of these disordered behaviors can occur at any weight, and should not be overlooked just because a person is not yet in an “anorexic” weight range. My problem with the removal of the weight criteria does not mean I think people need to be a certain weight to be considered sick or deserving of help. My problem is that I don’t think lumping these people into the anorexia diagnostic category is the answer because (a) it perpetuates the idea that anorexia is the only eating disorder worth taking seriously, so the only way to get anyone help is to label them as anorexic and (b) it creates a very ambiguous (and therefore in many cases, useless) diagnosis in terms of understanding the unique characteristics of anorexia that are indeed attributable to low weight.

I’ve already addressed the first point so I’ll move onto the second point– the fact that the revised criteria in the DSM-5 lead to a poorly defined and sometimes even useful diagnosis in terms of understanding anorexia. Eating disorders are mental disorders, yes, but there has been plenty of research looking into the unique medical and psychological features of anorexia that are present specifically due to an individual being significantly underweight. I highly recommend reading Klein and Walsh’s “Eating disorders: clinical features and pathophysiology” for more on this (I’m a total nerd and have a copy of the full article so you don’t have to pay for it– just ask and I’ll send you a copy 😉 ).

You would think the fact that the DSM-5 still specifies that a person must be at a “significantly low body weight” would eliminate this problem. I truly think this change was well-intentioned, and made to give clinicians freedom to use their own clinical judgement without having to rely on a concrete weight cutoff. The problem is, the lack of a concrete cutoff has actually led to a huge range of ambiguity on what can be considered “significantly low body weight.” I have come across individuals who admit to being well into the overweight or even obese BMI categories while also claiming to have a diagnosis of anorexia. I hope this doesn’t come off as insensitive, but that does not make sense. I know some will claim that although they are not technically underweight by BMI standards, they are indeed under what is “ideal” for them personally. This may be true; they may have a naturally very high set-point. These people may very well have eating disorders, but they do not have anorexia, at least not how that disorder was originally conceptualized and researched for most of its existence.

Think of it this way– you are a new therapist intern who is just starting a rotation on the ED unit of a hospital. You are assigned two of your first clients. One is a woman who has a BMI of 11 (undeniably “significantly underweight”) and the other has a BMI of 28 (high end of the “overweight” BMI range). Both are said to have diagnoses of anorexia. Are you a little confused? Lost as how to proceed? Probably. Although you don’t have a deep understanding of eating disorders, you have studied them and were always taught that anorexia was a disorder characterized by fears of gaining weight and behaviors that led to an individual being underweight. Treatment usually involves therapy but also nutritional intervention that helps the client return to a normal weight. But here you have an overweight client who is also “anorexic.” Does this person get the same treatment plan as the severely underweight client? Does she also need to gain weight, despite already being overweight? Should you be discussing the same things in therapy with this client?

This example may seem extreme or even absurd, but situations like this are actually occurring due to the changes in the DSM-5. To complicate matters, there is also now an “atypical anorexia” specifier included in the OSFED category. This is reserved for people who exhibit many of the behavioral criteria for anorexia without being underweight. This means that the same client could be diagnosed with regular old “anorexia” under the actual Anorexia Nervosa heading, or with “atypical anorexia” under the OSFED heading. With the concrete weight cutoff, this would not be an issue.

I hesitated to post this blog because I realize it is a sensitive issue for many. I know a lot of people have not been taken seriously because they don’t “look anorexic” or because their symptoms do not match perfectly with what is outlined in the DSM. I’ve experienced this myself. The way therapists/doctors/other professionals have treated me has definitely been influenced by the way I look. I have always been treated as more sick/worthy of attention when at very low weights even when I’ve been suffering just as much mentally at less underweight or even normal weights. And I won’t deny that this has probably contributed to my inability to completely give up my own eating disorder. Hell, the fact that I just wrote an entire tldr blog about this stuff may also say something about me and how important this stuff still is to me (and maybe shouldn’t be? Who knows). So please, don’t take my arguments in this blog to mean I’m one of those diagnostic snobs who wants to keep deserving people from getting the help they need all of the sake of keeping these diagnoses “pure” or some similar bullshit. I do hope this post was at least interesting to some, even if it just opened people up to the complexities and controversies that exist within the mental health system.

On that note, maybe anyone who exhibits any symptoms of an eating disorder should simply be diagnosed with “Eating Disorder.” Short and sweet; no confusing criteria, qualifiers, or subtypes. Just kidding, I’m not actually proposing this. 😉

 

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