Diabetic and Dying: Diabulimia

Not yet an illness recognised by the NHS and with only limited research so far, here’s why eating disorder campaigners are so concerned about deadly diabulimia.

The longer this eating disorder goes unrecognised, the more lives it will take. (Photo: Mario Nazuoni/Reuters)The longer this eating disorder goes unrecognised, the more lives it will take. (Photo: Mario Nazuoni/Reuters)

The longer this eating disorder goes unrecognised, the more lives it will take. (Photo: Mario Nazuoni/Reuters)

Diabulimia is an eating disorder characterised by people with type 1 diabetes restricting necessary insulin to lose weight. Sufferers of type 1 diabetes don’t produce their own insulin, and thus need continuous hormone treatments to transport glucose from their blood into their cells. Limiting or forgoing insulin injections causes sugars to move to the urine, triggering weight loss as fat and muscle are burnt in lieu of the lost sugar.

Little research has been carried out into the eating disorder, so the exact number of sufferers is hard to ascertain. However the campaign group Diabetics with Eating Disorders (DWED) state that findings show that women with diabetes are twice as likely as men to develop anorexia or bulimia. DWED also suggest that “as many as 40 per cent of 15- to 30-year-olds regularly omit insulin.” There have even been studies indicating that over 30 per cent of women said they had purposefully restricted their insulin intake.

One of the fatal consequences of this disorder is what is called “diabetic ketoacidosis”, when the body starts to break down fats which creates poisons called ketones. In the period March 2012 to March 2013, over 8,000 people were admitted to hospitals in England and Wales, with symptoms of insulin omission. (It should be understood however that these figures are not representative of diabulimia itself, but of diabetic ketoacidosis, a symptom of the former.)

It is thought a trigger for this illness is the intense way in which diabetics are taught to measure food and to view sugar as “bad”. The American National Center for Biotechnology Information (NCBI), suggests that the way in which medical treatment for type 1 diabetes emphasises food measures, sugars, exercise and weight, “parallels the rigid thinking about food and body image that is characteristic of women who have eating disorders but do not have diabetes.”

A lack of understanding about the illness is putting sufferers of diabulimia at risk. (Photo: Birmingham Women's NHS Foundation Trust)

A lack of understanding about the illness is putting sufferers of diabulimia at risk. (Photo: Birmingham Women’s NHS Foundation Trust)

There are no current NHS guidelines for this illness; “Diabulimia” isn’t even a medical term, it is one made by the press, a portmanteau of diabetes and bulimia. Doctors do not currently receive training on how to help sufferers, and treatment for the illness is complex owing to the dual diagnosis of diabetes and an eating disorder. It is difficult to find healthcare professionals who know how to treat both problems, and often treatment for one can contradict the prescribed treatment for the other. As mentioned, treatment for diabetes includes a stringent way of looking at food, which Dr Goebel-Fabbri told The New York Times, “can mimic an eating disorders mind-set.”

The NHS is letting down sufferers by failing to recognise and provide adequate treatment for this illness. It primarily afflicts young women but, according to the campaign group DWED, cases amongst boys are also prevalent. Of the 8,500 diabetics admitted to UK hospitals for diabetic ketoacidosis in April 2010 to March 2011, the most common cases were of young women in deprived areas.

Of course, some NHS trusts have listened to the concerns of campaigners and have devised treatment plans for patients with both diabetes and disordered eating. The South London and Maudsley NHS Foundation Trust states that they “provide a unique service,” for sufferers and that staff understand the necessity of “bridging physical and psychological care.” However, the issue is the word “unique”; you would be hard pressed to find such recognition of the illness on many more trusts’ websites. There do seem to be a few private clinics and nutritionists who claim to specialise in the provision of treatment for diabulimia, yet the lack of treatment provisions on the NHS signifies that many people suffering are falling through cracks in an outdated system.

With the estimated rates of insulin omission amongst young diabetics so high and the plethora of life-threatening consequences, it is time the NHS formally recognised this condition. Individual cases of young people who have died from diabulimia seem to pop up in the media every year, and despite the many efforts of campaigners, this illness is still largely ignored at a national, administrative level of the NHS. Many healthcare professionals are concerned, having witnessed the harmful consequences that the lack of an official recognition of diabulimia has on sufferers. It’s time for the NHS to act.

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