The chances are that, with 377 million people suffering from diabetes globally, you either are a person, or know a person, who has to inject insulin and pass on the Krispy Kreme cheeseburgers. What you might not know about this widespread condition is that a huge number of type 1 sufferers have developed an as yet unrecognised eating disorder called Diabulimia, where they self-regulate their injections in order to control their body shape. Apparently, in the UK, a third of diabetic women between the ages of 15 and 30 are skipping their insulin injections in order to lose weight. In America, the figure's been estimated at 40 percent, and in Australia at an almost unbelievable 80 percent. I spoke to Jacqueline Allan, an ex-diabulimic and founder of DWED (Diabetics with Eating Disorders), to find out how serious this all is.
VICE: Hi Jacqueline. Why did you start skipping your insulin?
Jacqueline Allan: Well, I actually already had an eating disorder when I was first diagnosed with type 1 diabetes, so I already was at a high risk for developing diabulimia. Obviously when you get diagnosed with diabetes, suddenly you’re in an environment when everything’s about food, exercise and numbers. So if you have a tendency for that kind of thing to screw you up… I’d already been in recovery for bulimia for about a year when I was diagnosed, so I relapsed and literally started missing my insulin straight away.
How long was it before anyone noticed?
It was fairly drastic. Within 18 months, I had a stroke. I was 24 years old. The thing is, one of the symptoms of type 1 diabetes, before you get diagnosed, is weight loss, because your body doesn’t have any insulin in it. So obviously I’d experienced that, and was over the moon about it. But as soon as I started taking the insulin, I put the weight back on.
Yeah. When I first started missing my insulin, I knew that there were going to be complications, but I didn’t care. The whole point of a mental disorder is knowing that you’re doing the wrong thing but not being able to do anything about it. With anorexia or bulimia – and I’m not saying that they’re not serious illnesses – it takes a while for them to become fatal. With this, it can happen in a day – it only takes one time to kill you. I work with people who are in wheelchairs, I work with people who are on dialysis… and they’re all women around the age of 25 years old.
What else can happen if you skip your insulin?
It can make you infertile, you can end up with peripheral neuropathy (damage to the nerves, usually in your hands and your feet), autonomic neuropathy, which means low blood pressure, as well as heart problems and kidney disease. Having high blood sugar can result in retinopathy, which can make you blind. Diabetes is actually the main cause of blindness in the UK at the moment, and the highest rise is in women between the age of 15 and 30. Then there’s gastroparesis where all the nerves in your stomach die. This is the irony of it, because it means that food can’t move through into your intestines, you just throw it up. In hospital they then just think you’re bulimic. It can make your bowels fail, and make you wet yourself – I know girls who now have to wear adult nappies.
So the same as undiagnosed type 1 diabetes then – basically really awful. Why haven't I heard about this condition before?
At the moment diabulimia isn’t officially recognised as a mental disorder, but DWED are hopefully getting it in the DSM (Diagnostic and Statistics Manual), which comes out in May. At the moment, they’ll wrongly diagnose you with anorexia, then in hospital they’ll feed you all this high-sugar food, which isn’t good if you’re diabetic!
Do hospitals often get it wrong?
I had a friend in inpatient treatment and they were watching her eat, but they weren’t watching her inject so the whole time she was losing weight. Eventually she actually keeled over and died on the ward, surrounded by doctors. Another friend of mine had severe gastroparesis, and was in hospital for eight months being told that she was bulimic, before they did a scan on her stomach. She was literally at death’s door. Once they did the scan, they fitted her with a gastric pacemaker and she walked out the hospital two weeks later.
Do you worry that media coverage might actually propagate this eating disorder among diabetics?
To be honest, we’re always really careful with what we do in terms of press because it’s so dangerous. It’s not the same as going on a crash diet – a crash diet won’t kill you in three days. I’ve had people come up to me and say, "I saw something about this in a magazine so I tried it." One of my best friends did, and she died two years ago – she’d done so much damage to herself that she just went to bed one night and didn’t wake up.
Jesus, that sounds awful. Have you had a positive response to DWED?
Yeah – when we started there were 30 of us, and now there are over 2,000 worldwide. When someone comes to us with a problem, we contact their GP, their diabetes clinic, find out where they’ll be sent for eating disorder treatment, and try to educate them about diabulimia. We’ve had a lot of success just by intervening at that level.
Although this sounds like it’s all doom and gloom, it’s never too late to try to get better. I had really severe retinopathy and I had a stroke – but now I’m just about to graduate from my second degree, and I run a charity full-time. You might think you’re too far down the road, but that’s just not the case. So anyone out there who’s suffering can get in touch, and we’ll do our best to help them.
Find out more about DWED and get in touch with them on their website.
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