Dropping Insulin to Drop Pounds
The practice of withholding insulin as a way to lose weight is a serious eating disorder with devastating consequences.
Barclay Wadas bargains with herself. She tells herself it's temporary, just for a few days. It's just until the waistband isn't so snug. It's just until she's not so stressed out. It's just until she's back in control—of her feelings, her eating, her size, her life. Then she'll take her insulin shots again. But first, she has to drop a few pounds.
Wadas, a 37-year-old mother who lives with her husband and three daughters in Marlborough, Mass., is among thousands of women with type 1 diabetes who restrict their insulin doses in an effort to lose weight. The media has dubbed the practice "diabulimia," a term that's controversial among doctors and mental health professionals because of its association with bulimia, in which a person purges food through deliberate vomiting or laxative abuse.
"Yes, it's a purge," says Ann E. Goebel-Fabbri, PhD, an instructor in psychiatry at Harvard Medical School and an investigator in the Section on Behavioral and Mental Health at Joslin Diabetes Center in Boston, Mass. "But the purge comes through calorie and fluid loss."
Without enough insulin, the body can't use food for energy, breaks down muscle and fat, and tries to rid itself of unused glucose through urination. This leads to drastic weight loss, but it can also cause ketoacidosis, a life-threatening condition in which the blood becomes acidic and the body becomes severely dehydrated.
Goebel-Fabbri and her colleagues recently published a study in the journal Diabetes Care suggesting that up to 30 percent of women with type 1 restrict their insulin to lose weight at some point in their lives. For those in the study who did so, the consequences were severe: Not only were they more likely to develop complications such as kidney disease and foot problems, they were 3.2 times more likely to die over the 11-year study period, and to die an average of 13 years younger than those who didn't restrict insulin. Insulin restriction occurred in girls as young as 13 and women as old as 60.
Grim statistics like these do little to deter a woman caught in the terrible tide of eating disorders, of which the practice is considered a part. Indeed, actually developing complications is often not enough to get someone to stop: Wadas has diabetic eye disease and gastroparesis, a condition in which the stomach doesn't empty well because of nerve damage. The vomiting caused by her gastro- paresis has sent her to the hospital several times, as have bouts of ketoacidosis.
And yet, when her clothes start to feel tight, she strikes that bargain with herself. "I think that if I don't take insulin for a few days, once I drop a couple of pounds, then I'll start up again," she says. "But then I procrastinate starting up again."
As with all eating disorders, girls and women are far more likely to practice insulin restriction than boys and men are. But what works for treating eating disorders alone does not necessarily work for what Joel Jahraus, MD, refers to as the "dual diagnosis" of eating disorders and diabetes. Jahraus is department chair and medical director of the Eating Disorders Institute (EDI) at Park Nicollet Health Services in Minneapolis.
"For instance, people with diabetes are taught to read labels so they know everything that goes into their mouths," he says. "But that's exactly what creates problems for someone with eating disorders."
Wadas, who has tried several treatment programs since the trouble started in 2003, has encountered difficulty with what seems to her to be a one-size- fits-all approach. "I was an out- patient, and [the treatment providers] wanted to take the focus off of food, but for someone with diabetes, you can't do that," she says. "I couldn't talk about the artificial sweeteners that are a big part of a diabetic's life, either, because they didn't want to focus on 'diet' foods. But for me it wasn't 'diet' food. It was just food."
She notes the irony of having to focus on numbers for her blood glucose control, yet fight the urge to use a number on a scale to judge her self-worth. "I attached so much guilt and shame to numbers. I used to weigh myself every morning, and certain numbers freaked me out," she says. "Getting rid of my scale was a big step for me. It was progress. But I don't monitor my blood sugar nearly as much as I should. The numbers drive me crazy."
Jahraus says this is a common dilemma for those coping with eating disorders and diabetes. "We try to avoid numbers for things like weight, and instead think more in terms of what the person can do in general for better health, but we also have to stress that this is different from blood glucose numbers. It's a tough balance."
Overall, treatment for people with eating disorders and diabetes should involve a team of specialists, says Jahraus, ideally including a diabetes specialist such as an endocrinologist, a psychiatrist, and a dietitian. Only a handful of such comprehensive programs exist. Although specialists at EDI are working with staff from the International Diabetes Center at Park Nicollet to develop a treatment plan that could serve as a model for facilities and hospitals around the world, for now, there is a dearth of options and those battling with a dual diagnosis often find themselves trying treatment after treatment, with little success.
Family plays a crucial role in recovery, says Goebel-Fabbri. Unfortunately, in many cases home is where the seeds of eating disorders are planted. Experts agree that, taken to the extreme, a parent's discipline and desire for a child's success can create a dangerous drive for perfection in the child that can contribute to the development of an eating disorder later. "In treatment, there should be a focus on realistic expectations, not only with athletic and academic performance, but also specifically with diabetes management," Goebel-Fabbri says.
Yet even a comment tossed off the cuff by a parent or spouse, such as calling a child "chunky" or using "chubby" as a term of endearment, can be devastating, says Jahraus. "Be careful with your language."
Goebel-Fabbri and Jahraus agree that silence can be fatal if you suspect that your loved one is grappling with an eating disorder and insulin restriction. Signs include changes in weight, a preoccupation with label-reading beyond diabetes care, increasing time spent alone, and an obsession with exercise. Parents might also consider whether their child's A1C, which indicates blood glucose control over three months, is consistent with data recorded in his or her glucose logbook. If the child has been writing down near-normal blood glucose values but the A1C is high, the child may be covering tracks, and it may time for the parents to take a bigger role in monitoring and insulin administration.
If you're concerned about someone you love, approach with sensitivity. "The starting point has to be 'I'm worried,'" says Goebel-Fabbri. "You can say, 'I'm worried about your health, and it occurs to me that this might be something you're struggling with. How can I support you?'"
Parents should pay close attention to how their children respond to the world around them, says Jahraus. "When you see them really looking at labels, start talking about it. Ask them why they are looking at them. If they're looking at a magazine, ask, 'How does that image make you feel? You seem troubled by it.'"
Wadas makes a point of talking to her daughters, who are 7, 9, and 11 years old, about their bodies. "We talk about it positively for their sake," she says. "But it's also something I do for myself, because I want to believe it, too."
Those grappling with eating disorders and insulin restriction may go to great lengths to hide their struggles, but experts agree that there are several signs to look for:
- A preoccupation with weight or dieting, even without actual weight loss
- Label reading beyond what is necessary for insulin dosing
- Increasing isolation and a desire to be left alone, particularly during mealtime
- Obsession with exercise; exercising in secret or at odd hours
- A1C values that are much higher than what daily glucose values recorded in his or her logbook would suggest
Terri D'Arrigo is a writer living in Babylon, N.Y.