The Eating Disorder You've Never Heard Of
Tempted by potential weight loss, diabetic adolescent girls are tampering with their insulin doses and putting themselves at risk for blindness, kidney failure, and amputated limbs.
Clinicians call it “ED-DMT1,” the dual diagnosis of an eating disorder and diabetes (“diabetes mellitus type 1”).
Most people call it “diabulimia.”
But before it even had a name, Maryjeanne Hunt called it her “quirky little weight-management strategy.”
In 1971, when she was 10, Hunt found out she had type 1 diabetes. She had to take insulin shots every day and follow a special “diet” for the rest of her life. Her mom was dieting all the time anyway, so it didn’t seem like a big deal.
But at age 14, while trying on a dress, she noticed her curves in the mirror. She told her mother, “This dress makes me look fat.”
“Yes,” her mom replied, “You look kind of chunky.”
Hunt suddenly felt very self-conscious about her body. She then made a connection that hadn’t occurred to her when she was diagnosed with diabetes: I have a tool I can use to get rid of this fat.
Or rather, a tool she could stop using.
Before Hunt started taking insulin, her body couldn’t absorb glucose, the body’s energy source. Diabetics who don’t use insulin lose the excess sugar (and calories) in their urine.
So to lose weight, Hunt stopped taking insulin, or took just enough to keep herself from going into a diabetic coma.
“I played with that, and found what I thought was great success, dropping pounds dramatically,” Hunt says. She also found herself in the emergency room, over and over, for the next 22 years, because her body’s cells were dropping all the energy they needed to survive.
Hunt had no name for it, and neither did doctors in the 1970s. The term diabulimia has emerged only in the last 15 or so years.
People with diabulimia are type 1 diabetics who also have an eating disorder. Most deliberately stop taking their insulin, or manipulate the dose, as a way to lose weight.
“Diabulimia,” a combination of “diabetes” and “bulimia,” is a bit of a misnomer. Bulimia is an eating disorder in which a person uses behaviors such as vomiting, laxatives, diuretics, exercise or other purging behaviors to prevent weight gain. Those with diabulimia are said to “purge” their calories via excess glucose in their urine.
The term “implies that there’s one thing women with diabetes struggle with - bulimia - when they have an eating disorder,” says Ann Goebel-Fabbri, Ph.D., a psychologist at the Joslin Diabetes Center in Boston and an assistant professor in psychiatry at Harvard Medical School.
Some patients with diabulimia, however, continue to take insulin but still suffer from such eating disorders as anorexia, bulimia and binge eating.
No one has studied exactly how many people suffer from diabulimia. But according to a study published in BJM (formerly the British Medical Journal), adolescent females with type 1 diabetes are 2.4 times more likely to develop eating disorders than peers of the same age without diabetes. Other studies show that about 30 percent of females with type 1 diabetes intentionally omit insulin.
Because diabulimia is not yet officially recognized as a medical or psychiatric diagnosis, it is often misunderstood or left untreated.
Short and long-term consequences of insulin restriction include eye problems (from blurred vision to blindness), kidney failure, nerve damage, osteoporosis, vascular disease, amputated limbs and death.
People with diabulimia develop these conditions far sooner, and with more severity, than those with diabetes alone. Females, especially adolescents, appear to be at higher risk than males.
Goebel-Fabbri says she sees patients in their 20s who’ve already had treatments for eye disease, or are awaiting kidney transplants.
“This should not be happening in 2014,” she says. “There’s so much hope in diabetes treatment, which can reduce these complications massively. This is a tragedy.”
Castlewood Treatment Centers, an eating disorder program with facilities in Missouri, California and Alabama, sees five to 10 cases each year of patients with diabetes who manipulate insulin, says Deanna James, director of marketing. “It’s a huge increase,” she says. Five years ago, the centers “did not even ask about that on the assessment, and now it is standard.”
To understand why insulin reduction causes weight loss, it helps to understand type 1 diabetes. Food we eat is broken down into glucose, a sugar that circulates in the blood. For non-diabetics, the pancreas pumps out insulin, which allows cells to let glucose in for energy. In people with type 1 diabetes, the immune system attacks cells in the pancreas that make insulin. Type 1 diabetics must check their glucose levels manually; based on their blood sugar levels, and what they plan to eat, they must give themselves insulin. If they don’t, or underdose, their bodies can’t absorb glucose.
The body makes drastic attempts to compensate. It goes into starvation mode and starts to break down muscle and fat, releasing acids called ketones. The ketones build up, leading to diabetic ketoacidosis (DKA), which can be fatal.
According to Ovidio Bermudez, M.D., chief medical director at the Eating Recovery Center in Denver, Colorado, diabulimia, or ED-DMT1, as he prefers to call it, “is a relatively new phenomenon. People have not been diligent about insulin use for a long time; they forget, or are less careful, but it’s not intentional. What’s new is this manipulation, with the specific purpose of weight loss.”
Many of the warning signs of diabulimia apply to other eating disorders, such as negative body image; obsession with weight and nutrition; skipping or restricting meals; eliminating carbohydrates or fats; eating in secret; feelings of guilt and shame about eating; significant weight loss or gain; compulsive exercising; menstrual irregularities; and depression and anxiety.
Other warning signs apply to diabetics who restrict insulin, such as symptoms of hyperglycemia, or high blood sugar, including increased thirst and urination, irritability and extreme fatigue. Those with diabulimia might avoid going to see their endocrinologist or doctor. They often test their blood sugar in secret, or not at all, and keep the results from loved ones and doctors. Some add other substances to their insulin to obtain a more “normal” blood sugar reading.
Why might someone with type 1 diabetes be at increased risk for developing an eating disorder? Diabetics, to manage their disease, must closely monitor what they eat, which can lead to an unhealthy focus on calories, carbohydrates and weight control. Also, type 1 diabetes is a chronic condition that requires daily attention for a lifetime, which can be a physical and emotional struggle.
Erin Williams, co-founder of We Are Diabetes, a support organization for type 1 diabetics who suffer from eating disorders, says when she turned to diabulimia at age 11, “weight wasn’t an issue. I was just incredibly embarrassed I was diabetic, a person with a disease. I thought no one would want to be my friend. I wanted to be like everyone else. Why couldn’t I go out and have a piece of pizza with my friends?
“People started taking food away from me, asking why I was eating a Skittle. I had no control over anything in my life.”
She could, however, control the amount of insulin she put in her body.
Eventually, Williams lost control and turned to binging, because she was constantly hungry without any food being absorbed by her body.
“When I binged, the amount of insulin I needed was so high, it did become a weight thing. I thought if I gave myself insulin, I was going to gain weight,” she says.
Diabetics often hear that taking insulin will lead to weight gain, but according to Bermudez, “insulin is not a weight-gain hormone; it regulates energy production. The only way to gain weight with insulin is to overeat.”
The increase in weight that some diabetics experience, he says, is often just the body normalizing itself after being starved.
“If I introduce insulin in a person starved at a cellular level, and they eat at the same time, glucose enters the cell and feeds the cell, so the patient regains weight that was lost,” he says. “The body plays a little bit of catch-up, and gains weight back that it should.”
Goebel-Fabbri says the “weight” gain is often water retention as the body soaks up insulin and water due to dehydration, “but it doesn’t last forever.”
Some patients with diabulimia need hospitalization or inpatient treatment to become medically stable. Whether treatment is inpatient or outpatient, a team of doctors working closely together is recommended: an endocrinologist, psychotherapist, diabetes educator, registered dietitian and, in many cases, a psychiatrist.
The Diabulimia Helpline includes links to treatment centers known to help patients with diabetes and eating disorders.
Dawn M. Holemon, a psychiatrist and medical director at Castlewood Treatment Centers, says patients with diabulimia often require closer monitoring.
“You have to be more careful, making sure the person is doing blood-sugar checks, and watching them, because the tests are easy to manipulate,” she says. “But you’re still dealing with an eating disorder mentality, so you have to start there. "
One goal at eating disorder treatment centers is to get patients away from a hyperfocus on food and counting calories and carbs. But diabetics still have to pay attention to those dietary concerns.
A less rigid approach to diabetes and eating is usually recommended.
“The philosophy at Castlewood is, a balanced meal plan is the way to treat an eating disorder, whether you’re a diabetic or not,” Holemon says. “It includes everything in moderation.”
Scare tactics, guilt trips, belittling and shaming are not helpful.
Williams, 30, who is earning a degree in nursing and diabetes education, was treated for diabulimia at age 16 and now suffers from diabetic retinopathy, kidney damage, osteoporosis, ulcers and neuropathy.
She says patients should be careful when checking out eating disorder treatment centers to make sure the staff understand diabetes.
“We have different lifestyle needs,” she says. “Somebody needs to meet those needs or we’re not getting help.”
Hunt, now 53, is the author of “Eating to Lose: Healing from a Life of Diabulimia” (Demos Health Publishing). The Boston resident, a financial adviser and mother of 21-year-old twins, believes she would have developed an eating disorder with or without diabetes.
“My mother has always had an unhealthy relationship with food,” Hunt says. “But I don’t just blame her. I also think it’s perpetuated in our culture, and it’s not just body image. We’re a culture of ‘not enoughness.’ We’re never good as we are.”
Hunt says she didn’t get help for her diabulimia until she gave birth, because “I couldn’t pass this pathological way of looking at yourself to my kids.” She says long-term recovery comes from self-acceptance.
“I stopped engaging in the behavior, but I don’t think that defines healing from diabulimia,” she says. “True healing lies in deep acceptance of yourself, and that is a work in progress.”
Karen Lindell is a freelance reporter based in Pasadena, California.