Most people with Type 1 diabetes will have heard of diabulimia. Like any eating disorder it can be hard to talk about, but it's important that we do and more people are beginning to speak up about their experiences of diabulimia and the impact it has.
We've spoken to Jacqueline Allan, researcher at Birkbeck, University of London, who set up DWED (Diabetics with Eating Disorders) to get the facts about diabulimia and where to get help if it's needed.
What is diabulimia?
The word ‘diabulimia’ merges the words ‘diabetes’ and ‘bulimia’.
It is used to describe the situation where somebody deliberately and regularly reduces the amount of insulin they take due to concerns over their body weight and/or shape.
The long-term impact is severe hyperglycaemia and weight loss, as the body starts to break down its fat and muscle in order to get energy.
There are lots of reasons someone might not take as much insulin as they should, like fear of hypos or underestimating carb count. But when this reduction or even omission of insulin is related to weight control and occurs over a long period of time, it is classed as diabulimia.
It’s really important to know that diabulimia is a mental illness; it’s not a rebellion or shout for attention, and although it's technically not a medically recognised condition, healthcare professionals are familiar with diabulimia and support is available.
What’s happening in the body?
Without insulin, glucose levels build up in the blood. Hyperglycaemia leads to polyuria (going to the toilet lots). This means that any calories taken in by eating are passed straight through and out of the body in the urine. As a result, the calories are not used and the body is starved of its source of energy - energy that’s needed for every organ to function.
If hyperglycaemia remains untreated, it develops into life-threatening DKA (diabetic ketoacidosis). In DKA the body starts to break itself down in the hunt for energy, which leads to weight loss and other complications. If DKA is left untreated, it is fatal.
Is diabulimia dangerous?
Diabulimia is incredibly dangerous. Research shows that people who don’t give themselves enough insulin over a long period of time, have a much shorter life span. Complications linked to diabetes, including retinopathy, neuropathy and nephropathy, appear more quickly and it can lead to infertility. In cases where diabulimia leads to severe DKA and is not treated, heart and organ failure occurs.
Why do people do it?
There are lots of reasons diabulimia may develop. It’s been suggested that for people with Type 1 diabetes, the way you need to live to manage the condition, and the environment you find yourself in, can make people more vulnerable to eating disorders. For example:
- obsession with food labels
- negative attention to weight
- hypo bingeing
- constant awareness of numbers
- parent attitude towards Type 1 diabetes
- shame over management
- negative relationships with healthcare providers
- difficulty losing weight due to insulin.
All of the above have been listed as diabetes-specific causes that can lead to eating disorders in people with Type 1 diabetes.
It’s unlikely that any of these exist by themselves and diabulimia usually develops from a complex combination of biological, psychological and social difficulties.
How many people are affected by diabulimia?
We honestly don’t know. Different reports say different things and there are lots of problems with the way the data is collected.
But, being reserved, it is estimated that 40 per cent of all women between the ages of 15-30 with Type 1 diabetes give themselves less insulin in order to lose weight. We also know that women with Type 1 diabetes are twice as likely to develop anorexia or bulimia, and new research (1) from Canada suggests that 60 per cent of Type 1 women will experience a ‘clinically significant’ eating disorder by the time they are 25. Of course, not all of those who intermittently omit insulin will develop diabulimia, just as not all of those who go on a crash diet will develop anorexia but unfortunately a significant proportion do.
But it’s not just women that can be affected by diabulimia. Research (2) shows that men with Type 1 diabetes have a ‘higher drive for thinness’ than their non-diabetic counterparts, making them more susceptible to diabulimia.
What does the medical community say about diabulimia?
Diabulimia is not a medically recognised condition, but it’s a common term among the diabetes community. However, new changes to the Diagnostic Statistical Manual – guidance used by healthcare professionals – mean that insulin omission is now considered to be a clinical feature of anorexia and bulimia.
Where can you get help?
With the right help and support, diabulimia can be overcome. It’s really important that if you are struggling with diabulimia you reach out and tell someone what’s going on.
More and more diabetes units are becoming familiar with diabulimia, and so are GPs and eating disorder specialists. Diabulimia requires careful treatment from a team of specialists, and some dedicated recover programmes are now up and running in the UK.
Diabetics with Eating Disorders (DWED)
The national charity DWED was set up to directly address diabulimia and other eating disorders in those with Type 1 diabetes in 2009. On the website you can access specialist information, keep up with the latest developments, request training for your Healthcare team and there is an online forum where you can chat to others in the UK who are going through the same thing.
Diabetes UK Helpline
We’re at the end of the phone if you ever want to talk. Our Helpline has dedicated, trained counsellors to listen and to help. Call 0345 123 2399*.
1) Colton, P. A., Olmsted, M. P., Daneman, D., Farquhar, J. C., Wong, H., Muskat, S., & Rodin, G. M. (2015). Eating disorders in girls and women with type 1 diabetes: a longitudinal study of prevalence, onset, remission, and recurrence. Diabetes care, 38(7), 1212-1217.
2) Svensson, M., Engström, I., & Åman, J. (2003). Higher drive for thinness in adolescent males with insulin‐dependent diabetes mellitus compared with healthy controls. Acta Paediatrica, 92(1), 114-117.
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