Diabulimia is an under-the-radar eating disorder that affects people with type 1 diabetes, and girls with diabetes between the ages of 7 and 18 are at the highest risk for developing it.

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When Erin Akers was 9, she was diagnosed with type 1 diabetes, an autoimmune disease that causes the body to stop producing the insulin it needs to survive. At 14, she decided that losing weight was more important than taking her insulin. She spent her prom night in the hospital.

What landed her in the hospital was diabetic ketoacidosis (DKA) a life-threatening complication of diabetes that happens when the body doesn’t have enough insulin. Without it, the body can’t use sugar for energy, causing it to break down fat for fuel, producing acids known as ketones. Excess ketones cause the blood itself to become acidic. “Everyone else was dancing the night away, and I was in the hospital trying not to die,” said Akers, founder and CEO of the Diabulimia Helpline.

Diabulimia is the intentional restriction of insulin by people with type 1 diabetes to induce weight loss by excreting blood sugar through the urine. The term diabulimia is a bit of a misnomer, as it implies that it’s a combination of diabetes and bulimia. In fact, insulin restriction can be a component of any type of eating disorder, including anorexia and binge-eating disorder. It’s estimated that 7 percent of adolescents with type 1 diabetes have an eating disorder, compared with 2.8 percent of the general adolescent population. An estimated 30 to 45 percent of women with type 1 diabetes will suffer from diabulimia at some point.

Untimely — and deadly — health risks

Type 1 diabetes, which is usually diagnosed in childhood, requires the use of supplemental insulin because the pancreas has stopped producing it. Without sufficient insulin, blood-sugar levels become dangerously high. Over time, this can lead to kidney damage, heart damage, retinopathy (eye damage that can cause blindness) and neuropathy (damage to the nerves of the feet and legs). Additionally, people with type 1 diabetes who intentionally restrict their insulin have triple the risk of dying, compared with those who don’t restrict.

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Anyone with type 1 diabetes faces the possibility of developing one or more of these complications. When someone has diabulimia, they may develop these problems decades earlier — a 20-year-old with diabulimia may already have retinopathy and neuropathy. Akers said there is a sense of shame about developing complications, especially for diabetes patients who also have an eating disorder.

Training for an eating disorder?

Managing type 1 diabetes is a 24/7 job. The necessary attention to meal planning, carb counting, portion size, label reading, and exercise, along with dietary restraint — including ignoring the body’s natural hunger cues — and resulting feelings of deprivation can set the stage for an eating disorder. “There’s constant mental math,” Akers said. “You don’t have the luxury of just picking up an apple and eating it.”

Constant focus on numbers — including adjusting meals and exercise based on blood sugar levels — feeds perfectionism and obsessive tendencies. Constant glucose meters can heighten this obsession. “We are taught that our whole life has to revolve around numbers if we want to live,” Akers said. “It’s not just enough that we are obsessed with our numbers, we’re being judged by our numbers.” Girls diagnosed with type 1 diabetes between the ages of 7 and 18 are at the highest risk for developing diabulimia. Other risk factors include having a higher body mass index before diagnosis, body dissatisfaction, low self-esteem or history of depression, and having a history of dieting or eating disorders.

What does “noncompliance” really mean?

When Akers was diagnosed, she was instructed to take her insulin and eat what she was told. “I was an overweight child, and did not like what was happening,” she said. “I wanted to eat to fit my lifestyle. Instead, I was told, ‘You eat what we tell you to eat, you don’t get to talk back, you don’t get an opinion.’” She was also told that her excess weight would kill her by the time she was 20, and decided that losing weight was more important than managing her diabetes. “My doctor told me that if I didn’t lose weight I would die. I took that very seriously and very much to heart.”

Diabulimia is often missed by doctors, who may describe a patient as being noncompliant with insulin but not realize the noncompliance is intentional. Akers said that not only is “noncompliant” the most hated word among people with diabetes, but when someone is “noncompliant,” there’s always a reason. “No one with type 1 diabetes wants to die from it. We all have goals, we all have dreams.”

After repeatedly ending up in the hospital with ketoacidosis, she told a psychiatrist that she was withholding her insulin in order to lose weight. But because she was eating what she was supposed to, wasn’t making herself throw up, and wasn’t binge-eating, the psychiatrist told Akers’ parents that she didn’t have a eating disorder — she was just a rebellious teen.

With few treatment options available at the time, Akers eventually took matters into her own hands, reading what little research there was on her condition. She contacted a national eating disorder association and asked, “There’s an eating disorder out there that’s ravaging the diabetic community — what are you going to do about it?” The response? “That’s a diabetes problem.” She contacted the American Diabetes Association with a similar question. The response? “That’s an eating disorder problem.”

A phoenix from the ashes

A relapse that nearly killed her — “For 56 seconds, I had no breath sounds, no heartbeat, no nothing” — prompted Akers to resume taking her insulin, and then to found the Diabulimia Helpline. Now in its 10th year, the nonprofit organization offers a 24-hour hotline (425-985-3635), as well as online support groups, a list of treatment centers, and other resources for individuals struggling with diabulimia, as well as for their family members and health care professionals. You can reach the helpline at 425-985-3635, the other resources at www.diabulimiahelpline.org.