What's In a Name?

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

That’s one of my favourite quotes by Tori Amos that celebrates those of us that feel alien or abnormal as wonderful freaks. 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 very much extends to the notion of 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 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 exasperate that. The case may be especially true when it comes to eating disorders that are distinguished by weight guidelines that seem to categorically define you al too easily.. It has always seemed bizarre to me that you can be a bulimic one week but a few pounds less the next and you are suddenly ‘anorexic type 2, (with binging and purging). Of course as much as we might deny that weight matters in determination of how sick you are, that anorexia classification is a prize in place of bulimia, when weight loss is always the sick goal.

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

Diabulimia is not the best term for a number of reasons that I won’t go into now, 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 and 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 recognised and defined by clinical features as a matter of urgency. The lack of such is costing lives. People with diabetes and eating disorders that are in serious need of sufficient care are being routinely overlooked dismissed and invalidated by doctors that can’t distinguish an issue worth dealing with, ir's one that they cannot put in a pin into or find in their medical books. This kind of reaction from health professions can be hugely damagiing and make someone feel even more reluctant to seek out help. It can lead to the false conclusion that their problem is not a serious one as a disordered mindest creeps in too easily: a toxic, irrational voice  whispering that you are not sick enough or worthy of support.

A concrete diagnosis would make the medical profession sit up and listen as well as providing 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’ certainly needs to be pinned down by a particular number of omission episodes, because of course missing an insulin dose one time does not mean someone has diabulimia, just like one episode of self induced vomiting does not equal bulimia. Other documented factors may involve a fear of insulin and rejection of diabetes care services.

I still don’t like labels.  I feel that classing 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 diagnosis. No one person with an eating disorder is the same as someone else and so treatment should be tailored accordingly.  This means listening, and allowing doctors the time to do so. Evidently an injection of NHS funding could not come soon enough.

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

By Claire Kearns.