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It's hugely under-diagnosed, but the risks of this little-known eating disorder include blindness, limb amputation, and early loss of life.
When Rebecca Ryan woke, her eyes were swelling. Giant bruises blossomed from her eye sockets, and she was rushed to the nearest hospital.
Tests ensued. What was wrong? Rebecca lay quietly in bed. She was worried about two things: the first, her health. The second, that doctors would find out what she'd been doing. "I was thinking, shit, I've really screwed up here. I was so ashamed of myself. I didn't want anyone to know, because they'd be horrified."
Rebecca was 19 when she began deliberately withholding insulin to lose weight. Over the next five years, the kilos dropped off. Eventually, so did her hair. By the time she was 24, she had descended into a spiral of guilt, shame, and unhappiness that only ended when she accepted she wasn't just bad at managing her diabetes – she was suffering from an eating disorder.
When I was injecting insulin, I felt like I was injecting fat.
"It got to the point that when I was injecting insulin, I felt like I was injecting fat," Rebecca says. "It was just the most horrible feeling. So then I just fell into a cycle of restricting insulin, losing weight, and feeling awful and guilty." By the time she was hospitalised, she was giving herself just enough insulin to stay alive.
A side-effect of poor diabetes control can be blindness, caused by retinopathy. Rebecca knew that, but losing weight had become all-consuming. At the hospital, doctors did not find any link between her swollen eyes and diabetes. But for Rebecca it was a wake-up call. "I think I was waiting for something major to happen to kick me in the arse and get me to sort myself out," she says. Today, she still has her sight, and is in recovery from diabulimia.
It is estimated that up to 40 per cent of women between the ages of 15-30 with Type 1 diabetes will not give themselves the life-sustaining insulin injections they need in order to lose weight.
While it's not a clinical diagnosis in the psychological bible DSM-IV, diabulimia is a term used by the diabetic community to refer to this practice of withholding insulin for weight loss purposes. People with diabulimia will also often also be diagnosed with anorexia, bulimia, or another eating disorder. In Rebecca's case, by the time she was seen by mental health services, her life was defined by obsessive thoughts, depression and anxiety around food.
An estimated one in 11 of the world's population are living with diabetes, of which there are two types. Type 1 is an auto-immune disease, where the body attacks its own insulin-creating cells in the pancreas. Sufferers have to manage their own blood glucose levels by giving themselves insulin after each meal.
There is no known cause for Type 1, and it cannot be cured. It is most often diagnosed in early adolescence, unlike Type 2 diabetes which has a later onset (30-40 years) and is linked to obesity.
Wellington Hospital endocrinologist Dr John Wilson says that without insulin injections, sugar builds up in the blood and the body begins to burn fat to survive. This can lead to severe hyperglycaemia which is extremely dangerous, and can cause blindness, infertility, coma, and death.
If insulin is withheld repeatedly, it increases the risk of early death.
"Diabulimia is a pretty well-recognised issue, but it is difficult to pinpoint in patients. Most of them give themselves enough insulin to keep themselves out of hospital, but their general control is far from ideal," he says.
"The most difficult group is that teenage to young adult group. They are trying to figure out who they are, relationships, and being bombarded with media images at a time when diet becomes a big part of their life."
During her first year of university, Rebecca was exhausted all the time. When she was finally diagnosed with diabetes, her blood sugar was so dangerously high she had to be hospitalised.
At the beginning, keeping record of what she ate was kind of fun. She lived with two trainee doctors, and they made a game of it. But soon, Rebecca got sick of her life being measured. "I wanted everything to be perfect, every time I tested I wanted my numbers to be perfect and if they weren't I felt like a failure." Despite exercising, she gained 10kgs.
I was tired and dehydrated, my skin was horrible, my hair started thinning.
"I just blew out a little bit, and I'd always been that skinny girl I guess. In my mind, it was my body reacting to the insulin that made me gain weight. I found it really frustrating," she says. "I moved to a new town, where no-one knew me, and I didn't have any accountability. I wasn't defined by my diabetes. That's when I just sort of fell into a pattern of poor control."
She soon realised it was linked to weight loss. "I just went 'Oh, okay, that's kind of convenient and easy,' even though I felt like shit. I was tired and dehydrated, my skin was horrible, my hair started thinning.
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"I went to a really weird and dark place. I would avoid doctors' appointments, because I didn't want them to see I wasn't in control. It's awful because you know the consequences of your actions could be blindless, limb amputations, but none of that stuff seems to matter. I was just at my most vulnerable then, I was so self-conscious. But everyone was telling me I looked great, and that's kind of what gets you."
For someone who is predisposed to an eating disorder, any kind of diet can be a trigger – and the quantifying required by diabetes makes it even worse, New Zealand Eating Disorders Clinic's Dr Roger Mysliwiec says. "They have to limit their carbohydrate and fat intake, which is exactly the behaviour that we see as an initiating factor for an eating disorder. It just makes them so vulnerable."
Studies have shown those with Type 1 diabetes are more than twice as likely to develop an eating disorder. Mysliwiec believes diabulimia is hugely under-diagnosed, and unveiled a project at the recent Australia & New Zealand Academy for Eating Disorders conference to find its true incidence. "Most people are not trained to recognise it. There's a very low level of knowledge, and an under-provision of psychological services."
In an initial survey conducted by the Waikato Diabetes Service, one in four patients aged 15-25 showed signs of disordered eating.
After her eyesight scare, Rebecca turned a corner. She began seeing a psychologist, and now feels healthier than she has in year. "It's taken me a long time, and it's still in the back of my mind. I still have my bad days," she says.
"I really think that doctors need to take the mental health of young people with diabetes into consideration more. You don't want diabetes to control your life, and when you're diagnosed they say, 'This doesn't change anything.'
"But believe me, it does."
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