The desire to be thin can be overwhelming. Few people know that better than Kelie Gardner, who started inexplicably losing a lot of weight during high school. She thought it was great until she discovered the reason—she has type 1 diabetes and her body can’t absorb the nutrients it should. After she was diagnosed and started taking insulin, Gardner returned to a healthy weight. Unfortunately, she wasn’t happy with this sign of improvement. “When I was on insulin, my body was able to start functioning normally,” says Gardner, now 26. “I went up to a normal body weight, but I was used to being skinny. I had the fear of, ‘Oh gosh, I’m going to be fat.’”

While learning about diabetes, Gardner read a book about a girl who manipulated her insulin to lose 10 pounds for prom. “That was something that always stuck in my mind,” she says. “If I wanted to lose weight really easily, I could skip my insulin or use less.” A couple of years later, Gardner, who also suffers from bulimia, started cutting back on insulin regularly and lost 10 pounds. “Everyone said, ‘You look so good.’ I started feeding off of those comments. I thought, if they say that about 10 pounds, another 10 or 20 will be even better.”

Although aware of the consequences, Gardner only injected four or five units of insulin a day—she was supposed to take 23. At her lowest point, Gardner isolated herself in a three-day insulin-free binge and purge cycle. Skipping injections for even this short period of time landed her in the ICU and nearly cost Gardner her life.

Bitter Medicine

Gardner’s response may seem extreme, but according to Dr. Richard Hellman, president of the American Association of Clinical Endocrinologists, medical studies have been documenting the simultaneous occurrence of type 1 diabetes and eating disorders for 50 to 60 years. What’s new is the idea of combining them under one medical term: diabulimia. “Once someone coined the term [diabulimia], all the doctors who didn’t even consider it started linking the two,” Hellman says. “Bulimia everyone understands; diabetes everyone knows about. But linking the two hadn’t been talked about.” In fact, the word diabulimia only surfaced in the last few years. Because diabetics are “purging” calories through their urine, the disorder is generally accepted as a form of bulimia.

“More than 90 percent of adolescents with type 1 diabetes reported missing at least one shot a month to keep weight down,” Hellman says. Because these people skip insulin only occasionally, their problem is considered milder, but it can still be deadly. Hellman says that around 10 to 15 percent of adolescent diabetics suffer from severe diabulimia.

Grace Shih, a registered dietitian and eating disorder counselor at Lucile Packard Children’s Hospital at Stanford, has made it her mission to educate her peers about the affliction. “The medical society knows about conditions of eating disorders and diabetes, but they don’t call it diabulimia,” Shih says. “It’s not yet in medical terminology or medical journals.” And it’s the unknown that is dangerous.

Killer Consequences

It’s too easy to be true: Avoid injections—an already painful task—and drop 10 pounds like magic. But skipping insulin comes with a deadly risk—no one would inject if he or she didn’t need the stuff to stay healthy. Even if a person is diabulimic for a relatively short time, he or she is at risk for ketoacidosis, the build-up of acids in the bloodstream that can lead to diabetic coma or death.

Essentially, people with diabulimia are keeping themselves sick and letting their diabetes kill them. Even if they manage to control their ketones by skipping only a few injections, the long-term effects of shortchanging their bodies can be devastating, with consequences ranging from nerve damage to kidney failure to death. According to Hellman, people with diabetes who forgo their insulin can suffer from diabetic retinopathy, a condition in which blood vessels in the eyes swell or leak and abnormal vessels grow on the retina. Over time, both eyes can lose vision.

Mary (not her real name), 23, lives in the U.K. and has been diabulimic for almost five years, beginning only three months after being diagnosed with diabetes. “I lost my eyesight completely,” she says. Cataract surgery has since fixed her eyes, but she’s still very far-sighted. “I’m killing myself every day,” Mary says. “I’d be the first person to turn around to anyone [who skipped insulin] and say, ‘Sort yourself out, you bloody idiot! How can you act in such a selfish way?’ But I just can’t stop.”

The Search for Support

Until recently, willfully untreated diabetes wasn’t documented as an eating disorder, making it hard for people with diabulimia to get treatment. Gardner had difficulty finding anyone who understood her specific issues. “When I started doing research on eating disorders and diabetes, there just wasn’t much out there,” she says.

Gardner tried one-on-one therapy but didn’t see results quickly. Finally, she found a program called Quest in Santa Rosa, California, where the director was working on a dissertation on diabulimia. “I felt like that was a miracle,” she says. “This person understood what I was going through.” Gardner admitted herself to the 12-week intensive outpatient program, but she didn’t walk out cured. “I still struggle,” she says. “But I’ve learned that even if I have a bad day, it doesn’t undo all the good days or hard work that I’ve done.”

Mary tried a 15-week group therapy program, but didn’t find it as encouraging. “The group was for anorexics, bulimics, and EDNOS (Eating Disorder Not Otherwise Specified)—no one there had any experience with diabulimia or diabetes,” she says. “My bulimia was the focus, whereas I mainly needed help with my injecting.” In other words, while Mary could get help for her bulimia, she found it hard to find counselors who had experience working with people who regularly skipped insulin.

A Way Out of the Dark

Now that diabulimia is medically acknowledged, doctors and patients hope for a brighter future. Mary dreams of a normal, happy life with a family, but says she can’t have healthy relationships with her disorder. “I’m lying all the time to everyone,” she says. “I lie about being healthy. I lie about the amount of food I’m eating. I can’t have a real relationship with anyone because I don’t have a truthful relationship with myself.” But she doesn’t want sympathy—she wants help for herself and everyone else suffering. “If you’re worried about anyone with diabulimia and they say they’re fine, they’re lying,” she says.

Hellman says a better grasp of the illness will bring the most success. “People need to understand [that diabulimia] is not the mark of a defective personality,” he says. “It signals that you need more understanding and patience.” The medical community continues to expand its knowledge of diabulimia, which will hopefully lead to more successful treatment options and possibilities for sufferers to heal.

Recognize the signs

Here’s what to watch for if you suspect a type 1 diabetic you know could have diabulimia:

• Vulnerability to an eating disorder: “A person who is very obsessed about weight is someone more at risk to fall for an easy way out,” says Dr. Richard Hellman, president of the American Association of Clinical Endocrinologists. Watch for people who eat a lot but don’t seem to gain—or even lose—weight.
• Personality changes: “Watch what they say,” says Grace Shih, registered dietitian and eating disorder counselor. “If the blood sugar is high or low, they don’t feel well so they won’t seem like themselves.”
• Regressing back to symptoms of undiagnosed diabetes: When people have poor control of their diabetes, they have excessive thirst and urination, feel weak, and think less clearly. If they aren’t taking insulin, they become nauseous, have abdominal pain, and vomit.
• Don’t make judgments: It’s much more helpful to be understanding. Ask questions like, “Are you taking your insulin?” and “Do you ever skip it? Why?” Encourage them to get help and be healthy.

Treatment tactics

Shih believes treatment must be three-fold to be effective.

• An endocrinologist must be involved. An endocrinologist is a doctor who specializes in diseases that affect glands and hormones in the endocrine system. “[The doctor] would have to know how to treat diabetes and adjust insulin,” Shih says.
• The patient needs the help of a dietitian. The dietitian would help the diabulimic with nutrition. He or she would ideally have knowledge of eating disorders as well as diabetes.
• The diabulimic should see a therapist. This doctor would need to understand eating disorders and have medical knowledge of diabetes and insulin as well.

Essentially, each specialist must have a working knowledge of the other fields. Shih’s Web site, gracenutrition.org, launched in October 2007, can help diabulimics find the help they need.