Claire's Story (Diabulimia)

This is the personal story of a young woman with Type 1 Diabetes AND an eating disorder.  Claire, a friend of our namesake, Moonshadow (Jenn), shares her personal struggle.  Claire lives in Great Britain, and her criticism is directed at that country’s health care system. However, as long as the DSM criteria doesn’t recognize “Diabulimia”, there is no reason to expect a different response anywhere.

Exhaustion. Weakness down to the bones. Blurred vision and dizziness. An insatiable thirst that cannot be quenched no matter how much you drink. Back and forth from the kitchen for water and to the toilet to urinate. The smell of pear drops on your breath. The insulin pen left untouched on your bed-side cabinet, until you can't take it anymore and permit yourself a few meagre units to get by.

This is the reality of living with Type 1 Diabetes and an eating disorder. You will have surely heard about both of these conditions as separate entities. But what do you know about the highly dangerous, and often fatal, combination of the two?

Research shows that, not only are women and girls who have Type 1 Diabetes at twice the risk of developing anorexia or bulimia, but that as many as 40% of 15 – 30 year olds, of both sexes, regularly omit insulin to control their weight. This practice leads to devastating consequences such as nerve-damage, organ failure, infertility, blindness and, in the worst cases, death. Despite such horrendous complications and commonality, 'Diabulimia’ or Eating Disorder-Diabetes Mellitus Type 1 (ED-DMT1) is difficult to diagnose and there are no current guidelines for the NHS on how to deal with the issue.

Although the term ED-DMT1 covers all presentations of someone with Type 1 Diabetes and any kind of intertwined eating disorder, the process of insulin omission is a common behaviour, often denoted by the media-coined label 'Diabulimia'. Without insulin, blood sugar levels start to rise and beyond a certain level the body is unable to convert glucose and calories into energy. This leads to the cannibalisation of fat stores, muscle, and eventually tissue from major organs as cells are starved of oxygen. By-products called ketones are produced, which turn the blood acidic. When there is a certain level of ketones in the system the body develops Diabetic Ketoacidosis (DKA). DKA is always fatal if left untreated. Always.

It can be an alarming concept for people to understand, but consider this: Would you save someone that you did not care about? Making that conscious decision to keep yourself alive everyday, several times a day, can be draining when you have a strong sense of self-worth. In a disordered brain the pain can feel justified, and the focus of weight loss can be your only goal. The fact is that you have a fail-safe way to achieve that, and somehow the staggering risks can seem worth it.

Many people fail to realise the emotional struggle of living with Type 1 Diabetes. It is relentless and unforgiving, and acceptance is not easy. When I was diagnosed at age 9 I was given all the practical instructions about what insulin to take, what to do when experiencing low or high blood sugars and which snacks are better than others. But there was no support available to the mental processes I was experiencing. Perceived alienation from peers and isolation are common aspects of a Type 1 diagnosis. I only wanted to be 'normal' and spent a lot of time in denial which led to self-neglect. I have vivid memories of squirting my insulin down the toilet because I simply did not want to deal with it. The overload of information relating to food, and focus on weight, can also lead to obsessional tendencies if you are already psychologically vulnerable. I had already fallen into the trap of disordered eating when I discovered the 'trick' of withholding my insulin in order to lose weight. Finally I had the magic answer!

Jacqueline Allan is the founder of Diabetes with Eating Disorders (DWED) and has been a great support to myself over the years. DWED is a small independent charity that runs on donations, and the only charity that deals with DMT1/diabulimia.  DWED is urgently in need of further funding and sufficient acknowledgment. It is a cause very close to my heart and it is through connecting with others that I feel I have survived.

The fact that Diabulimia/ED DMT1 is not officially recognised in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as an eating disorder is shocking given the prevalence of the disorder. Anorexia and bulimia can of course be hugely damaging, yet the process whereby a sufferer comes to reach a point of extreme danger is usually much more gradual than in cases of Diabulimia. Someone grappling with the condition may not present as gravely unwell as someone with anorexia but could quite literally be hours away from coma if they have not taken sufficient insulin over a prolonged period.

Without accurate diagnosis accessing, appropriate treatment for sufferers can be extremely difficult. Sufferers are often turned away from GP’s and clinics and even been told that their illness is not valid. I spent many years trying to get my eating disorder team to talk to my diabetes consultants, with both trying to address the issues they were trained in but failing to grasp the fact that my illness needed to be looked at as a whole. Jacq Allan says: "Our members have been told that ‘Diabulimia’ doesn’t exist, they have been deemed ‘non-compliant’ and discharged from their health care providers... These are people who desperately want help and it is just not there. Not only is this ignorant it is potentially lethal. It’s why we have an annual memorial service.”

This should not be happening. It is upsetting, unnecessary and unacceptable. DWED's tagline is 'We Are The Unseen". With such a clear need for sufficient recognition, awareness and subsequently support and treatment, why are we still not being heard?


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