What is Diabulimia?
By Dr. Kate Dudek
Diabulimia, cited as the ‘world’s most dangerous eating disorder’, is a condition where people with type 1 diabetes mellitus (T1DM) deliberately and regularly ration their use of insulin in order to lose weight. Challenging to both diagnose and treat, many people with the condition keep their eating habits secret. Optimal management necessitates different specialists joining forces to combat both the medical and psychological aspects of the condition.
Type 1 Diabetes
T1DM is a chronic, lifetime condition, for which there is no cure. Worldwide, 5-10% of people with diabetes will have this form of the condition. Unlike type 2 diabetes, T1DM has nothing to do with eating unhealthily or living a sedentary lifestyle. It happens when the immune system attacks the beta cells in the pancreas, preventing them from producing insulin. Without insulin, the glucose that is taken in through the diet, cannot be converted into energy and, instead, accumulates in the bloodstream. This can be very dangerous as the body enters starvation mode and starts to break down muscle and fat, releasing ketones, which rapidly build up, increasing the risk of diabetic ketoacidosis, which can be fatal. Receiving a diagnosis of T1DM can be daunting; it is a condition that requires daily monitoring and continual insulin therapy. It is also an early onset condition, meaning that patients are often diagnosed during childhood or early adolescence. Facing up to a lifetime of medical intervention at such a young age can certainly be emotionally challenging and typically comes at a time when body awareness is naturally heightened by puberty.
Bulimia Nervosa is an eating disorder characterised by periods of binging on food and then purging to prevent weight gain. The most frequently observed purging behaviours are self-induced vomiting, laxatives, diuretics and excessive exercise. People with T1DM have a unique purging behaviour available to them, the deliberate misuse or avoidance of insulin. Diabetics need insulin to survive, so by withholding it in an attempt to control their weight, people with the condition are actually putting their lives at risk.
Why are people with T1DM at increased risk of developing an eating disorder?
Unfortunately people with T1DM are at increased risk of developing an eating disorder, and this can be due to both physical and emotional factors. For a start, people with the condition have a disrupted metabolic system, meaning they do not break down food in the normal way. They also spend a disproportionate amount of time dissecting food labels and recipe content, analysing numbers and having to take control of their diet. Control, and the fear of losing it, is a major factor in the development of an eating disorder.
A further issue comes from the fact that, prior to diagnosis, many people with T1DM have lost a significant amount of weight. Insulin therapy can cause weight gain, which can negatively impact a person's self esteem and body confidence. In fact, insulin therapy and weight gain can form a vicious cycle, with insulin-induced weight gain necessitating a higher dose of insulin. This increased insulin leads to increased hunger and dietary intake, which, naturally, increases weight further and thus, the cycle continues. At a time when a person may already be feeling emotional, anxious and out of control, this unwanted weight gain might come at a critical time.
Diabetic burnout can also increase the risk of developing an eating disorder, as patients become increasingly frustrated, start disregarding their blood glucose levels and look for ways to escape the confinements of their condition.
How big a problem is it?
Whilst diabulimia is not currently a medically recognised term, it does represent a growing problem and the condition was included in the UK’s National Institute of Health and Care Excellence (NICE) 2017 guidelines for eating disorders. The extent of the problem is highlighted by the fact that up to 40% of women with T1DM, who are between 15 and 30 years of age, regularly omit insulin for weight control. These women are also at increased risk of adopting other purging behavious to control their weight and overcome body dissatisfaction, including restricting their food intake, misusing laxatives and over-exercising.
It is estimated that in their lifetime:
- 0.5 - 3.7% women will experience anorexia nervosa.
- 1.1 - 4.2% women will exhibit symptoms of bulimia.
- 11% women with T1DM will develop an eating disorder.
These figures represent a significant, worldwide health issue, that urgently requires research, funding and support.
A major issue comes from understanding how best to treat the condition. For many eating disorders, a key part of the therapy involves removing the focus a patient has on food. Those patients with T1DM cannot do this; in order to stay healthy and avoid serious diabetes complications (visual disturbances, increased infection risk, neuropathies, kidney damage and amputations, to name just a few), patients must carefully monitor and regulate their food intake.
Treatment of diabulimia requires a multidisciplinary team, comprising diabetes specialists and psychiatrists to manage both elements of the condition.