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Would a diagnosis by any other name taste as sour?

In Australia, eating disorders are diagnosed according to the Diagnostic and Statistical Manual (DSM) and feature a cluster of behaviours including a:

* preoccupation with food or weight;
* persistent concern with body image;
* “thinness at all costs” mentality that justifies unhealthy eating/diet practices such as severely restricting food or compensating for calories ingested;
* abnormal sensitivty about being perceived as fat;
* intense and irrational fear of body fat and weight gain;
* misperception of body weight or shape;
* tendency to misattribute normal emotions to feelings of “fat”;
* tendency to use eating (or not eating) to anesthetize unpleasant feelings

According to the DSM-IV-TR, there are three eating disorder diagnoses- Anorexia Nervosa, which is characterized by severe restriction of food; Bulimia Nervosa, which is characterized by binge eating and then dangerous compensatory behaviour; and “Eating Disorders Not Otherwise Specified”(EDNOS)- a diagnostic waste basket for people who don’t meet the strict criteria of Anorexia and Bulimia. A fourth condition, Binge Eating Disorder (binge eating without compensatory behaviour) is briefly noted in the appendix as a condition for further research- accordingly this is currently classified under EDNOS.

[please see DSM-IV-TR Diagnosis for Eating Disorders for more on current diagnostic criteria]

The invisible diagnoses

Research suggests that well over 50% of people with eating disorders meet an EDNOS diagnosis and that Bulimia is five times as common as Anorexia. However despite its relatively rare prevalence, it seems that Anorexia is the disorder that captures the interest and attention of the community. This attention is warranted as Anorexia is a serious psychiatric illness that is often touted as having the highest mortality rate of any mental illness. Yet we could argue Anorexia attracts community voyeurism rather than community concern. The distinctive “Anorexia” look, and “celebriti-sation” of the illness positions it for perfectly for media sensationalisation that completely trivializes its reality.

However, this article is not about Anorexia. Rather, it is about the “invisible” eating disorders. As aforementioned, they are far more prevalent- and the experiences of sufferers (and their families) are equally torturous. Bulimia typically does not lead to significant weight loss, and is thus far less likely to be detected than those suffering from Anorexia. In fact it typically has an eight to ten year concealed gestation before sufferers alert family members to their pathological behaviour and engage in health seeking activities. The initially “invisible” nature of the illness, and lack of community education about it, facilitates the disorder so that it becomes completely embedded. Sufferers feel deeply ashamed about the behaviour they engage in as part of the condition- particularly because they do not meet the emaciated stereotype of eating disorder sufferers. This often means they feel like “failed anorexics” who are in the constant and unsuccessful pursuit of weight loss.

Even more invisible- and far more prevalent- are those people who suffer from EDNOS. These are the enormous number of people who realize that their eating is clinically problematic because it impacts on their daily functioning. However many intimate that they feel they don’t have a “true” eating disorder because they don’t meet the strict diagnostic criteria of Anorexia or Bulimia. Specific clusters of symptoms within EDNOS have been identified and ‘coined’ by laymen. Reverse Anorexia, Bigorexia, Anorexia Athletica, Night Eating Syndrome, Orthorexia, Compulsive Over-Eating, to name but a few. However none of these are official to date. And of course the fact that they have no official name or clinical description means that everything – from research, access to treatment, to “evidence based” interventions – is compromised.

In addition, other people meet an EDNOS diagnosis but don’t actually realize this is the case. This may be because of poor health literacy: they engage in dysfunctional eating practices, however because they do not meet the strict diagnostic criteria for Anorexia and Bulimia they do not realize their eating practices are clinically significant. Given our current ‘obesity epidemic’ this warrants further exploration as this is quite possibly a relevant factor in individuals ‘sitting above their natural body weight’.

 The development of diagnostic criteria

It goes without saying that the development of diagnostic categories for mental illness is complex. Like many books, the DSM has undergone multiple publications with significant changes occurring in each updated edition. Originally published in 1952, the DSM initially diagnosed about 60 different disorders. This has since evolved with major reviews, the most recent being the DSM-IV in 1994 (which now lists over 200 disorders). The DSM-IV differed from its predecessor by adding cultural information, diagnostic tests, and lab findings (based on 500 clinical field trials). A text revision (DSM-IV-TR) was subsequently published in 2000 which supplemented categories in the DSM-IV with additional information based on the research studies and field trials completed in each area.

 The progression to the DSM-IV-TR highlights our dynamic and ever changing understanding of mental illness- and the complexity and time lag associated with developing diagnostic categories. This has evolved dramatically for eating disorders over the past 30 years. Only in 1979 was Bulimia coined as a mental illness, prior to that Anorexia was the only eating disorder diagnosis. Further, consider how many people have experienced Binge Eating Disorder (still not technically a diagnosable condition) and have remained undiagnosed in the 20 year time span between the DSM-IV (1994) and the forthcoming publication of the DSM-V (in 2013) (when it is finally recognized as a diagnosable condition)!

 Limitations of the current diagnostic criteria

One of the biggest limitations of the current diagnostic criteria for eating disorders is that it prevents “early intervention” given there is no grading of the disorders. You either have the illness- or you don’t. For example, many patients have described having their condition dismissed by their doctor simply because they did not meet the strict weight requirement as necessitated by the DSM-IV-TR. As such, a common complaint of people seeking treatment is that they are sent the message they need to “get sicker” to meet diagnostic criteria- and thus warrant treatment. Needless to say, this poses strong barriers to the accessing of treatment. This is particularly concerning as treatment outcomes generally improve with early intervention. Would it be more helpful to classify eating disorders along a spectrum, like autism? Or to have a grading system like other medical conditions such as burn severity or cancer?

Another significant limitation of the current diagnostic criteria is that it is common for people to move between diagnoses. For example, 40% of people with Anorexia are at risk of developing Bulimia- at the same time, behaviours associated with Bulimia tend to be a common pathway out of Anorexia. Some clinicians would argue that the symptoms (and treatment approaches) for an original diagnosis of Bulimia differ from those who exhibit Bulimic symptoms following an original diagnosis of Anorexia. Other clinicians adopt a “transdiagnostic” approach whereby specific diagnosis is not important.

 The future for eating disorder diagnoses

Much hope has been pinned on the release of the DSM-V, in that it would capture a broader range of dysfunctional eating patterns, thereby ensuring that the bulk of sufferers meet a clearer diagnostic category than EDNOS. This would also assist in facilitating early intervention and preventing overlap and changes between diagnoses. Proposals for diagnostic categories have been made in anticipation for the release of the manual in May 2013.

[please see DSM-V Proposed Changes for Eating Disorders]

We have a desperate need for more funding and research into eating disorders, to ensure that diagnostic categories accurately do capture what is presenting clinically. We are pleased to note that The Butterfly Foundation has done a wonderful job in this recently- however, this is really only a start.

The urgency is increased by the current ‘obesity epidemic’. It is paramount that more resources are invested into understanding the extent to which disordered eating is contributing to people sitting above their natural body weight. As we have written about elsewhere, it may be that the epidemic we are really facing is one of “disordered eating”- it would be helpful if the diagnostic criteria was adjusted to assist us in determining this.

See also:

An interview with Lydia Jade Turner and Sarah McMahon from BodyMatters Australasia

Australia’s Disordered Eating Epidemic

5 responses to “Would a diagnosis by any other name taste as sour?

  1. thanks for addressing this issue, i was hoping the proposed categories would be more along a spectrum approach… although i think some of the changes are great, the whole issue of having to meet some sort of weight criteria to qualify for anorexia is ridiculous. sure it highlights the seriousness of someone with extremely low weight plus anorexic behaviour, but surely if you have someone who is 160lbs who is starving themselves it is better to intervene earlier? instead current criteria requires they become skeletal before they can get help… many anorexcis i have known were obese as children… anorexia is no solution to obesity

  2. This is a very interesting blog. It is hard when you have a friend who is becoming more and more anorexic and you dont know what do to because no body else thinks there is a problem

  3. There are not many changes with the dsmv. I was hoping for more of a spectrum approach. thanks for an enlightening article.

  4. “One of the biggest limitations of the current diagnostic criteria for eating disorders is that it prevents “early intervention” given there is no grading of the disorders. You either have the illness- or you don’t. For example, many patients have described having their condition dismissed by their doctor simply because they did not meet the strict weight requirement as necessitated by the DSM-IV-TR. As such, a common complaint of people seeking treatment is that they are sent the message they need to “get sicker” to meet diagnostic criteria- and thus warrant treatment.”

    Yes!

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