Diabulimia: The Dangerous Way Diabetics Drop Pounds

Many type 1 diabetics with eating disorders will not take their insulin.

March 8, 2013, 3:52 PM

March 8,2013— -- At age 14, Erin Williams was tired of medicine. Williams was diagnosed as a type 1 diabetic at age 11, and after three years of enduring a never-ending regimen of insulin shots and strict diet restrictions, she was frustrated.

Embarrassed by her disease, she kept it a secret from everyone but her closest family and friends. At birthday parties, she made up excuses about why she couldn't have soda or cake. When a classmate saw her drinking juice boxes in the nurses office, she endured weeks of being called the "juice box thief" rather than just tell her classmates she had low blood sugar because of diabetes.

Eventually, Williams rebelled the only way she could, she decided not take her insulin. She just didn't want to adhere to the strict diet and medical regimen even though it was vital to her health.

"It wasn't this dramatic moment," recalled Williams. "It was mostly like I want to be like everybody else."

The next morning when Williams woke up, she felt fine.

"Well, nothing bad happened to me," Williams remembered thinking. "It creeps up on you. That's how it does it."

Emboldened by her experiment, she continued to restrict her insulin. Without a regimented amount of insulin in her body to process glucose, Williams' body started to burn through fat and muscle. She lost weight very quickly even as she ate all the same foods. Classmates started commenting on her weight loss and remarked that she looked great.

"You hear all these things and you're like, 'This is the greatest thing in the world,'" said Williams. "It takes a hold of your life like nothing else."

After living with type 1 diabetes for three years, Williams was exhibiting the first signs of a disorder often called diabulimia. The term refers to the dual diagnosis of type 1 diabetes and an eating disorder.

Many type 1 diabetics with eating disorders will not take their prescribed insulin so they can lose weight. Deprived of insulin, the body cannot break down sugars from food to use as energy. Instead the body's cells break down fat already stored and try to flush out the excess sugar through the urine.

While it leads to weight loss, it can also lead to nerve damage, damaged eyesight, kidney damage and osteoporosis, among a host of other ailments.

A study from 2007 that followed diabetics who restricted their insulin over 11 years found their mortality risk was three times higher than those who did not restrict their insulin.

While anorexia or bulimia are familiar terms, diabulimia is little known, even though it can affect a significant portion of the type 1 diabetic population. Studies and research into diabulimia are not comprehensive, but a 1994 study found that up to 30 percent of type 1 diabetic women will intentionally stop taking their insulin at some point in their lives to lose weight.

When Williams was diagnosed with type 1 diabetes at age 11, she became one of the approximately 3 million Americans to suffer from the autoimmune disorder in which the pancreas does not produce insulin. According to the Juvenile Diabetes Research Foundation, 30,000 Americans are diagnosed with the disease every year.

Her diagnosis also meant that her chances of developing an eating disorder more than doubled. A study from the University of Toronto found that adolescent girls with type 1 diabetes were 2.4 times more likely to suffer from an eating disorder than girls without diabetes.

Ann Goebel-Fabbri, a clinical psychologist and assistant professor in psychiatry at Harvard Medical School, has worked with many type 1 diabetic patients suffering from eating disorders at the Joslin Diabetes Center.

She said that there isn't a clear reason why type 1 diabetics have an increased risk for having an eating disorder, but she suspects that part of the problem is the way diabetics have to focus on food intake, their carb level and calories.

"The treatment itself [means] paying close attention to food and time of eating," said Goebel-Fabbri. "Oftentimes, that can mirror an eating disorder mindset."

In high school, the effects of Williams' diabulimia began to show.

She was constantly dehydrated because her body was trying to flush excess sugar through her urine. At night, she would go to the bathroom up to 20 times a night and was known for constantly carrying a two-liter bottle of soda with her at all times.

With her blood sugar running so high, Williams was also often sleepy and fell asleep in class. During her senior year, she was voted "Most Likely to Fall Asleep at Graduation."

When she went to the doctor with high blood sugar levels, she made up excuses that she had forgotten to take her insulin or that she had injected it improperly.

"All I heard from doctors is 'Why, can't you manage this? ... Is it that hard?" Williams said.

She said they never mentioned that she might be suffering from an eating disorder.

Diabulimia can be terrifyingly easy to hide. Williams could eat as much as she wanted and lose weight. Her other symptoms of fatigue and irritability could be explained as the normal behavior of a teenager.

Amy Criego, the chairwoman for pediatric endocrinology at the International Diabetes Center, said that the symptoms for diabulimia closely mimic poor diabetes control.

"Sometimes it gets hard to distinguish what's going on," said Criego, who added doctors can be wary of bringing up eating disorders with adolescent patients. "People get cautious of asking [about insulin restriction] because they don't want to give them ideas either."

Eventually, in her junior year of high school, Williams' family recognized that she was suffering from an eating disorder and put her in an eating disorder treatment center.

However, Williams said, the counselors at the center weren't used to treating a type 1 diabetic and never monitored her insulin intake.

Even in treatment, whenever she started to gain weight she would simply reduce her insulin intake again.

"People with this combined diagnosis [need a] team with eating disorder people and a diabetes education staff. That's the ideal," said Criego. "The treatment is very different."

Another problem is that common eating disorder treatments can conflict with basic diabetes care. For example diabetic patients have to pay careful attention to what they eat and how their body reacts to food, while eating disorder patients are encouraged to ignore food labels.

"A lot of the eating disorder programs take the focus off of food, you have to ignore your body perception," said Criego. "You can't do that with type 1 diabetes. You have pay attention to numbers."

Goebel-Fabbri said that some diabetics who have reduced their insulin intake can become fearful of taking the drug again.

"They have a lot of hunger signals because, on the cellular level, the cells can't access sugar. So the cells are starving. The body is starving," said Goebel-Fabbri. "That has further [unregulated] their appetite and eating behavior. I think that then adds to the fear that if they take this insulin, their hunger is going to be really high and [they'd lose control.]"

Williams spent her junior and senior years of high school in and out of eating disorder clinics.

When Williams would start to use her insulin consistently, her body would swell with water weight. The temporary swelling, which was the result of her body trying to hold on to water after being dehydrated, could mean that Williams gained as much as 20 pounds of water weight. Her legs swelled so much that the skin looked like "putty."

"I couldn't bend my leg," said Williams. "I thought I was going to say like that forever."

The swelling was temporary, but it made Williams too scared to stick with her insulin regimen for any length of time.

Dawn Taylor, a licensed psychiatrist at the Melrose Center who treats people suffering from eating disorders and is affiliated with the International Diabetes Center, said many patients with diabulimia initially feel worse when they retake their insulin.

"Once they start taking care of themselves, that's when the complications can start," said Taylor. "You can get over a lot of these complications [but] it's not very rewarding."

In college, Williams became so fatigued she spent most of her days asleep in bed.

"Nobody wanted to live with me," said Williams. "My roommates were calling home to my family, [saying], 'There's something wrong with your daughter.'"

Now over 18, Williams' parents couldn't force her into treatment anymore.

"What could my parents do? I'm sitting there telling them I'm fine," she said.

In 2007, Williams went to the doctor with a swollen ankle. After an x-ray showed no fracture, Williams was sent home with medication. Six months later, Williams fainted suddenly and was rushed to the hospital with her ankle sizably swollen again.

She was sent into the operating room to clear out the infection from her ankle. But after the doctor made the incision the medical team realized her ankle was not just infected but shattered.

Because of nerve damage from high blood sugar levels, Williams had been walking around on a broken ankle for months without even realizing it. Her ankle was so damaged she would have to remain in a cast for two years as it healed.

After a decade of insulin misuse, Williams, then 24, was suffering from osteoporosis. Sitting in the hospital bed, Williams finally decided she needed help.

She remembered thinking, "This has got to stop or I'm going to have medical issues for the rest of my life."

But in order to get help, Williams had to fashion a makeshift treatment team, which included a psychiatrist specializing in anorexia and bulimia, another counselor and a diabetes expert, in addition to her primary care doctor.

"It was really hard," said Williams, who also went online looking for information or support groups on diabulimia, but found little.

There has been little research on effective treatments for patients with diabulimia. An article published on the Juvenile Diabetes Research Foundation website last year called for a multi-disciplinary approach to treating diabulimia by creating a team that includes a medical doctor, therapist and registered dietitian, at minimum.

As Williams recovered, she was featured in a Self magazine article about diabulimia. After it was published, she started to hear from women across the country suffering from the same symptoms -- including many who thought they were the only one restricting their insulin.

One reader was 22-year-old Asha Brown. The college student had been diabetic since age 5 and had struggled with diabulimia since she was 14.

"This article was talking about me," said Brown, now 27. "I thought I was the only one."

Brown kept the article in the back of her mind for years before finally seeking treatment for diabulimia at the Melrose Institute in 2009. When she told a nurse about the article, the nurse happened to know Williams' contact information and gave it to Brown.

The pair quickly bonded over their experiences with the disorder and decided they wanted to help other type 1 diabetics find support.

Last year, they launched We Are Diabetes, an organization that works to publicize diabulimia and support those with the disorder.

Williams, now 29, has been out of treatment for five years and is working to get her registered nurses license and studying to be a diabetes educator.

But her past with diabulimia still affects her. She has had bleeding behind her eyes, holes in her kidneys and severe nerve damage. By talking to others about her experiences, she's hoping to encourage people suffering from diabulimia to get help before they suffer lasting damage.

"For me, it's a chance to help myself not feel so much regret," said Williams. "By helping other people, I feel what I went through at least has a purpose."