By the time she was 13, Erin Ackers was worn out.
She was tired of being different, fed up of having to test her blood sugar, calculate an insulin dose for every slice of pizza she had when she was out with her friends, and exhausted by the fear and unceasing mental math that comes with having Type 1 diabetes.
At the same time, she recalls being lectured by her doctor about her weight and her blood sugar levels. “At 13, I decided if I’m not going to be good enough, I’m going to stop trying” says Ackers, who is now 29. She stopped taking her insulin and began to binge on the foods her doctors had warned her to steer clear of.
But when she returned to school after the summer, her classmates complimented her for losing weight. In Type 1 diabetes, an autoimmune disease, the pancreas is unable to produce enough insulin for the body to use the energy contained in food. Without insulin, sugar then builds up in the blood and the body resorts to burning fat stores for energy. Unexplained weight loss is a common side-effect of untreated Type 1 diabetes.
In skipping her insulin shots, Ackers was effectively able to starve her body of energy while continuing to eat. “My daughter thought she had developed the perfect eating disorder. Because she could eat as much as she wanted and still lose weight” Ackers’ mother, Dawn Lee-Ackers, says.
What began as an episode of diabetes burnout quickly spiraled into a full-blown eating disorder—one which would cause irreparable damage to her body and almost cost Ackers her life. While there hasn’t been much research on the topic, an early yet significant study showed that almost a third of Type 1 diabetic women admit to having omitted insulin in an attempt to lose weight. It is often referred to as “diabulimia,” a catch-all term to describe eating disorders in Type 1 diabetics. Some adopt the bingeing and purging behaviors of anorexia and bulimia, while many—like Ackers—will stop or drastically reduce their insulin dose in a bid to lose weight.
A 2015 study published in Diabetes Care followed a group of 71 girls with Type 1 diabetes over a 14-year period into early adulthood. By the end of the study, 32 percent met criteria for an eating disorder.
Anorexia alone has been found to be the most deadly psychiatric condition. When combined with Type 1 diabetes it places an immense strain on the body. The early study of women with Type 1 diabetes—one that spanned 11 years—found that those who reduced their insulin doses or stopped taking it all together were three times more likely to die during the study. Those who recover are almost always left with devastating complications which can include blindness, kidney damage, nerve damage, and limb loss.
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“It’s like turning the clock back in time to when we didn’t have high-tech and designer insulin treatments,” says Ann Goebel-Fabbri, the study's lead author. Before the invention of insulin, people with Type 1 diabetes were expected to live only a few years after diagnosis.
With modern insulin, Type 1 diabetics can eat a varied diet, but they must scrutinize every morsel in order to measure an appropriate dose of insulin to process the energy in the food they eat. It could be that this hyper focus on food makes Type 1 diabetics more susceptible to developing an eating disorder. “Teaching someone to be a good diabetic is like teaching them how to have an eating disorder,” Ackers’ mother says.
A review paper published earlier this year found that children with a variety of chronic illnesses which impacted their eating habits, including Type 1 diabetes, were more likely to develop an eating disorder. Although the review wasn’t able to point to a direct cause, Sheehan Fisher, an assistant professor of psychiatry at Northwestern University and author of the paper believes that it may have something to do with a perceived lack of control. “The idea comes back to the idea of the autonomy of your own body, so when something is impeding on that, it…can lead to behavioral problems and disordered eating,” Fisher says.
Despite its prevalence, getting a correct diagnosis and treatment for Type 1 diabetics with eating disorders is far from easy. When Ackers’ mother began to suspect that something was up, she took her daughter to the doctor who praised her for losing weight. A pediatric psychiatrist declared that her then 14-year-old daughter was fine because she was still eating and wasn’t throwing up. Feeling like she had received a green light from her doctors, Ackers’ eating disorder spiraled. Finally, Ackers says, she felt like she was getting the doctor approval that diabetic children crave so much.
As she fixated on her weight, her world began to close in around her. She skipped school and fought bitterly with her mother. While her friends celebrated their prom night, Ackers was in hospital with diabetic ketoacidosis, a potentially life-threatening complication caused by high levels of sugar in the blood. “It didn’t matter that I was missing out on life, so long as I was thin enough,” she says.
When the time came to go to college, both mother and daughter hoped that it would be a fresh start, but their optimism was short lived. When she returned home for the holidays Ackers was hospitalized almost immediately with a staph infection in her spine.
It was then that Dawn Lee-Ackers made up her mind: Her daughter needed more help than she alone could provide. But when she called eating disorder support organizations, they said that it was a diabetes issue. Diabetes advocacy groups told her it was a mental health condition. Unable to find a place which understood the venn diagram of diabulimia, Lee-Ackers’ sent her daughter to a clinic in Florida which seemed promising. When she arrived, they drew up a meal-plan for Ackers but let her manage her own insulin dosing.
“That’s like letting someone with anorexia decide what to eat. They didn’t get it,” Lee-Ackers says.
Sitting at the cross-roads of mental and physical health, diabulimia is poorly understood. Worldwide, there are only a handful of experts on it. “I can probably name the number of people who do this work globally,” says Ann Goebel-Fabbri, a former professor of psychiatry at Harvard University who now runs a practice which specializes in eating disorders among diabetics. There is no entry for diabulimia in DSM-5, the authoritative catalogue of mental health conditions published by the American Psychiatric Association.
With little research into how to treat diabulimia, Goebel-Fabbri says that methods which have proven effective in treating other eating disorders can be of limited use when applied to Type 1 diabetics. Patients with anorexia or bulimia are often encouraged to avoid reading food labels, and to instead tune into their own feelings of hunger and satiety. But Type 1 diabetics have to read food labels so that they can calculate an appropriate insulin dose. Should their blood sugar levels run low, they have to eat, even if they’re not hungry.
“With anorexia you’re trying to get them to resume normal human behaviors,” Ackers’ mother says. But with diabulimia, she explains, the challenge is encouraging them to resume a behavior which may have triggered their eating disorder in the first place.
For Ackers, the turning point came when her heart stopped beating for half a minute.
After she left the Florida treatment facility, Ackers hovered on the border between remission and relapse for two years. During this time, she broke her leg and had to undergo surgery. After years of uncontrolled diabulimia, the strain of the operation was too much and in hospital the next day, her heart suddenly stopped beating.
Her mother looked on, helpless, as a doctor climbed up on top of her daughter’s fragile body and began pounding rhythmically at her chest. After 32 long seconds Ackers gasped and opened her eyes to find one doctor straddling her, another placing defibrillation panels on her chest.
Her first thought in that moment was, “Oh no, they’re going to make me take my insulin again.” But then she glanced over to the corner of the room to see tears streaming down her mother’s cheeks, “She had a look of pain in her face that I’d never seen on anyone before. She had just watched her baby girl die,” Ackers says.
In that moment, she resolved to never again skip her insulin again.
Eights years later, Ackers is in long term recovery, but she will suffer the complications of her diabulimia for the rest of her life. High levels of sugar in her blood damaged the nerves which control her stomach muscles, leaving her with a painful and irreversible condition called gastroparesis. Her kidneys were damaged to such an extent that it’s unlikely they’d ever be able to cope with the additional burden of a pregnancy.
“If I’m having a really hard day, that’s the one I’m probably thinking about,” she says.
Ackers is now determined to help others through diabulimia, a drive which she says helped with her own recovery. “A fire within me that had died with the eating disorder had been relit,” she says.
In 2009 she founded Diabulimia Helpline, the first non-profit in the country dedicated to supporting Type 1 diabetics with eating disorders. Her mother serves as their family and friends' liaison officer. Working with diabulimics and their family members from across the country, Ackers hopes to ensure that no one else will have to struggle with the condition alone. “Never again is there going to be another girl that feels that sense of isolation,” Ackers says.
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This article originally appeared on VICE US.