Women with Type 1 diabetes twice as likely to suffer eating disorders
Zoe Sole was nine years old when she lost 12 kilograms in three weeks.
She had been on a family ski holiday, and realised the weight loss upon returning home. Her doctor ordered blood tests, which showed her blood sugar was soaring. Zoe was rushed to hospital, where she was diagnosed with Type 1 diabetes.
The condition, in which the immune system attacks insulin-producing cells in the pancreas, has no cure. It does have a treatment. Synthetic insulin keeps Type 1s alive, but it comes at a cost: the drug makes it easy to put on weight, and almost impossible to lose.
Research has shown women with Type 1 diabetes are twice as likely as the general population to have an eating disorder. A hyper-awareness of carbohydrates' effects on the body, as well as being dependent on medication that makes weight loss extraordinarily difficult, primes young Type 1s for skewed thinking about food.
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When Sole was 15, a representative netball coach commented she had lost weight, and was playing well. The comment was well-meaning, but it set Sole on a downward spiral.
"In my mind I correlated that with, the more weight I lost the better netballer I would be," she recalls.
"I joined a gym around the same time and I think the combination just lead me to think I was overweight and unattractive in every sense of the word."
For three years, Sole would eat breakfast, sometimes lunch, and vomit up her dinner. When she was eventually diagnosed with bulimia, she realised: "This has got to stop."
For Sole, recovery was not a matter of learning to eat "normally". Type 1 diabetics must constantly consider their carbohydrate intake: every snack, drink and exercise session prompts a finger-prick to test their level of blood glucose, followed by an injection of insulin, or consumption of carbohydrates, to keep it within a stable range.
"The hardest thing is that you still have to take insulin, it's a daily thing," she says.
"A lot of psychotherapy's involved, a lot of talking's involved - it takes a lot to say, 'Hey look, I've had enough of this'."
"I think talking to people who've been through it... is so important... I couldn't have done it without support."
Now 25 and on the cusp of graduating medical school, Sole is better placed than most to understand the battles many young women have with diabetes, beyond the disease itself. In 2015, she co-founded Australasia's first initiative dedicated to eating disorders among Type 1 diabetics.
Type 1s have what Sole terms a "cruel" method of weight loss at their disposal: purposely omitting insulin.
"Diabulimia" is not a medical term, but it is a recognised phenomena.
Dr Rinki Murphy, a diabetes specialist for 10 years, sees a handful of patients who abuse insulin.
She empathises with the daily juggling act her patients are engaged in, to achieve a level of health non-diabetics take for granted.
"It's more convenient sometimes not to take insulin," Murphy says.
"It hurts to give it, it hurts to check [blood sugar levels], and you find that actually by keeping your level in a constant range you tend to absorb more of what you eat.
Any short term "benefit" is outweighed by potential catastrophe, however. Blindness, limb amputations, and kidney failure are among the often irreversible long-term consequences of chronic under-dosing.
In rare instances, the practice results in death from from ketoacidosis - when the body uses fat instead of carbohydrates as fuel, resulting in poisonous chemicals accumulating in the body.
In April, the Telegraph reported UK woman Lisa Day, a Type 1 diabetic since age 14, had died after years of purposely under-dosing herself with insulin. She was 27.
Sole, who tests her blood glucose levels up to 12 times a day and injects insulin about eight times a day, has never purposefully under-dosed herself.
But she says 30-40 per cent of Type 1 diabetics admit to omitting insulin to lose weight, and a further 80 per cent are aware of the practice.
She first became aware of diabulimia in 2012, when she was a leader at a diabetic youth camp.
"All the girls were talking about it," she recalls.
"I wouldn't say they were recommending it, more saying, 'I tried this before, have you ever done it, did you get sick, what happened...' "
Sole herself eventually found solace in CrossFit - she hasn't stepped on the scales since she first walked through the gym doors - but her recovery is ongoing.
"There's always going to be days where you're really stressed out and you're tempted to go back to what you know," she says.
"There's security in feeling in control."
The Diabetes and Eating Disorders Awareness initiative aims to educate medical professionals about the issue, as well as connect Type 1s and their parents with support services.
Sole and co-founder Lisa Ingle, a Type 1 diabetic and registered nurse, have debated the risk of discussing the practice in a public forum.
"We decided, because so many people know about insulin omission, you may as well talk about it," Sole says.
"People are already talking about it. What they're missing is how dangerous it is."
WHAT IS TYPE 1 DIABETES
The Ministry of Health reports more than 260,000 people in New Zealand have been diagnosed with diabetes. Around 10 per cent of diabetics in New Zealand have Type 1.
Type 2 diabetes is caused largely by obesity and diet; Type 1 results from the immune system attacking insulin-producing cells in the pancreas.
The symptoms are the same for both types – increased thirst and hunger, frequent urination, weight loss.
Type 2s can go into remission by changing their diet or having gastric bypass surgery.
Type 1s must manage their condition with synthetic insulin, and will have the disease for life.
WHERE TO SEEK HELP
Diabetes and Eating Disorders Awareness (DEDA) is the only organisation in Australasia dedicated solely to supporting and advocating for those with both diabetes and disordered eating. See deda.org.nz, or find them on Facebook.
Eating Disorders New Zealand (EDNZ) is a charity that supports, informs, and offers resources for carers of people with eating disorders, as well as educates medical professionals and improves awareness and understanding of eating disorders in the community. See ed.org.nz.