More than 725,000 people are affected by an eating disorder at any one time in the UK, while around 350,000 people are estimated to have type 1 diabetes. But what happens when you're afflicted by both at once? Chances are you've never considered the prospect but for some people, diabulimia, as the condition is known, is a daily reality.
It is estimated that 40% of all young women aged between 15 and 30 with type 1 diabetes live with the little-known condition. What's more, as many as 60% of women with type 1 diabetes will have experienced an eating disorder by the age of 25, research suggests. So what does it mean to find yourself in the middle of the Venn diagram between type 1 diabetes and an eating disorder? And why exactly is it so dangerous?
Diabulimia, a portmanteau of diabetes and bulimia, involves deliberately limiting the amount of insulin injected into the body in order to lose weight. Unlike type 2 diabetes, type 1 diabetes is an autoimmune disease and not linked to diet and lifestyle. Sufferers don't produce enough insulin naturally and so must inject (or pump) themselves with it, otherwise the body cannot process glucose and break down sugars from food to use as energy. Without enough insulin, the body is forced to use its existing fat, muscle and organs for energy. Even if the sufferer is a healthy weight, the potential consequences of misusing and shunning insulin include eye damage, kidney damage, fertility problems, loss of limbs, heart failure and even death.
Aside from those directly affected, very little is known about diabulimia – even among health professionals – but a new documentary, produced by BBC Three and BBC Newsbeat, aims to rectify this. Diabulimia: The World’s Most Dangerous Eating Disorder follows three young sufferers coping with both a mental illness that compels them to lose weight and the need to inject themselves with insulin in order to use calories properly and survive.
Professor Khalida Ismail, lead psychiatrist for diabetes at King's Health Partners, tells the BBC that diabulimia patients are “falling through the net” and dying when they shouldn't be because there are so few clinics and professionals with the expertise to treat them. Falling as it does between the medical and psychiatric umbrellas, diabetes teams may lack understanding of the mental aspect of the condition. Omission of insulin for weight loss is not currently classified as an official mental illness, which the charity Diabetics With Eating Disorders (DWED) is campaigning to change. Including diabulimia in the DSM or ICD [the US and UK's diagnostic manuals] would, they argue, help it to be taken more seriously. Indeed, until very recently sufferers have been able to seek help for one or the other condition, but never both in one place.
The documentary shows one woman, Gemma, 22, a young mum who was diagnosed with type 1 diabetes aged 12, in limbo as she waits to receive the appropriate healthcare. The lack of awareness and expertise makes it an extremely slow process. For Gemma, not injecting her insulin correctly is "addictive" she says, because it allows you to "eat whatever you want and lose weight".
Another sufferer in the documentary is Nabeelah, 21, who was diagnosed with type 1 diabetes at 16 and whose parents know she’s skipping her insulin but are struggling to understand the mental health aspect of the condition. And then there is Becky, 29, who was saved from the brink of death and is now beginning to rebuild her life, despite the illness leaving her with physical disability.
Becky developed problems with food when she was just 8 years old, but it wasn't until the age of 19 that she was diagnosed with diabetes. The disordered eating had persisted throughout her teenage years at dance college and at 20 she was diagnosed with anorexia. She was admitted to an eating disorder unit on three separate occasions between 2011 and 2013, the third time proving nearly fatal. She suggests that the stigma surrounding diabetes can sometimes spur on those with the disorder to lose weight.
"When people would ask me what I was in hospital for and I’d say I’d been diagnosed as a type 1 diabetic, they’d instantly look me up and down. You wouldn't do that to somebody else who had been diagnosed with something quite severe," Becky told Refinery29. "I was quite ashamed of it because I thought, hang on a second, I’d been at dance college for two and a half years and danced all day, five days a week – I’m not big – so I thought it [the diabetes] was caused by my weight, which obviously it wasn’t." And so she restricted her food intake and misused her insulin.
Her diabulimia meant she was forced to give up dancing – her blood sugar and ketone levels were dangerously high – and she lost friends just when she needed them most. After dance college, she began beauty therapy and one of her classmates was a fellow eating disorder sufferer. "One of my friends turned to me and said 'she’s just doing that for the attention', so I instantly thought I couldn’t say anything because I was going to get the same response." Becky put off telling her friends for as long as possible. "When it did finally come up, that’s exactly what I got – they backed off quite a bit because I was taking so much time off and not really engaging or going out for drinks with them. I ended up shutting myself off because I didn’t know what to do." Luckily her parents, both of whom are mental health nurses, provided the support she needed.
Becky is clear that the most important thing you can do if you're suffering with the disorder is to confide in someone. "What’s the worst that’s going to happen apart from them judging you or maybe pushing you away? And if they do push you away, it’s probably to protect themselves as well as you, because they find it so upsetting to see what you’re doing to yourself." Seeking mental health help is paramount, she adds: "Not just your normal GP because they don’t always understand mental health. If you can see a mental health consultant, go for it. Get them to help you as quickly as you can. Or ask your diabetic team to reach out to mental health professionals for you." Let's hope awareness of the condition grows sufficiently – and quickly enough – to enable sufferers to get the specialised care they need.
Diabulimia: The World’s Most Dangerous Eating Disorder is available to watch on BBC Three’s iPlayer channel now.