Why 'Diabulimia' Needs to be Formally Recognized by the Eating Disorder Community

“Some of the most wonderful people are the ones that don’t fit into boxes.” — Tori Amos

This is one of my favorite quotes which celebrates those of us who may feel “alien” or “abnormal.” It rejects the idea of fitting into moulds or being confined and rectangular. I don’t like the idea of type-casting people and stamping their heads with statistical criteria. This can extend to the notion of a diagnosis, particularly when it comes to mental health.

Why? Because it feeds into the concept of being defined by a disorder and having it steal someones identity. Nobody is the sum of their eating disorder, their depression or personality disorder. It may feel like you have lost yourself when you are entrenched by your illness, and diagnostic labelling can exacerbate that.

This may be especially true when it comes to eating disorders that are often distinguished by weight guidelines that classify someone. It has always seemed bizarre to me that you can be bulimic one week, but a few pounds less the next and you are suddenly “anorexic with binging and purging.” Of course, as much as we might deny that weight matters when it comes to determining how sick someone is, an anorexia classification is often a “prize” in place of a bulimia diagnosis, where weight loss is often the goal.

But someone with type 1 diabetes shouldn’t be given a diagnosis or either anorexia or bulimia, even if those disorders are recognizable by behavioral features. A person with type 1 diabetes and an eating disorder needs to be treated in a different way than someone without diabetes. This is why we actually do need some official terminology.

Diabulimia (ED-DMT1), in my opinion, is not the best term for a number of reasons, but it’s something that has become familiar, largely by way of the media. ED-DMT1 is a foreign language to most people, fairly so as it’s a clunky mouthful of a word, so T1-ED is a better fit and literally states what is in the tin: type-1-eating-disordered.  Regardless of what it is, we need to have something formally recognized and defined by clinical features as a matter of urgency. The lack of such is costing lives. Those with urgent care needs are being overlooked, dismissed and invalidated by doctors that can’t distinguish a problem worth dealing with. You can feel like your problem is not a serious one and it can be easy for the disordered, irrational voice to whisper that you are not sick enough or worthy of support.

A concrete diagnosis would make the medical profession sit up and listen, and could provide those with T1-ED with the means of validation. It would open the gateway to appropriate treatment facilities and become simpler to explain when raising awareness and informing those that are unfamiliar with it as an illness.

But furthermore, setting parameters around the means of identification are important. By this I mean distinguishing exactly what T1-ED consists of. It should ideally contain subtypes for anorexia and bulimia that run alongside, but not separate to type 1 diabetes. Insulin omission or “diabulimia” should be pinned down by a particular number of omission episodes, because just like one episode of self-induced vomiting does not always equal bulimia, missing one insulin dose does not always mean someone has diabulimia,. Other documented factors may involve a fear of insulin and rejection of diabetes care services.

I still don’t like labels. I feel like classifying someone as a person and not a diagnosis is important. Essentially, I feel that patients should always be considered individually rather than being lumped into a pile with others that share a broad diagnosis. No one person with an eating disorder is the same, so treatment should be tailored accordingly. This means listening and allowing doctors the time to do so.

So, what’s in a name? Nothing, yet absolutely everything.

The piece was originally published on Diabetics With Eating Disorders.