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How extensive is the problem? In a recent Toronto Hospital survey of 91 young women with diabetes, nearly a third admitted to using laxatives, bingeing/purging or omitting insulin to stay thin. Yet these troubling eating disorders are rarely talked about.
Insulin = Weight Gain
Taking too much insulin causes weight gain, while not enough causes the pounds to drop. It's no wonder that people with diabetes are often prime candidates for eating disorders.
"The frightening thing about omitting insulin to lose weight is that it works so well," says William H. Polonsky, PhD, a psychologist and CDE in San Diego who has helped many people with diabetes overcome their debilitating eating disorders.
In recent years, insulin omission in combination with binge eating has been classified by the medical community as an eating disorder. In a 1994 study published in Diabetes Care, Polonsky and other researchers found that out of the 341 women (ages 13-60) who were surveyed, 104 women (approximately one third) took less insulin than prescribed in order to keep their weight down.
Largely, people with type 1 are more likely to cut out insulin than people with type 2. This is because many people with type 1 experience a pronounced weight loss when they develop diabetes. For many, especially young women who want to lose weight, this rapid weight loss is hard to resist.
"I remember one woman I was working with who was dangerously close to losing her leg if she didn't start taking her insulin and keeping her blood sugars in check. When I talked to her about this, she said she realized she needed to change her behavior, but she just wanted to lose 10 more pounds first," recalls Polonsky.
Jennifer, age 40, knows firsthand the powerful pull of insulin omission and the cycle of guilt and depression that comes with it. Diagnosed at age 12 with type 1 diabetes, she has been battling an eating disorder since age 15.
Three years ago Jennifer sought help for her eating disorder and since then has been on the road to recovery. However, for many years even the people closest to her were unaware of the low self-esteem and negative self image problems that plagued her.
Instead of taking four shots of insulin a day she would take as little as one shot to keep from gaining weight.
"I was hospitalized for ketoacidosis a couple of times, but after awhile I became very good at pushing myself to the edge without being hospitalized. I'd go all day and night without insulin, then take a shot in the morning, so I could drag myself out of bed."
Jennifer, a medical professional, agrees the cycle of insulin omission is difficult to break. "It's a manipulative tool. It's had total control over me, and I've wallowed in guilt over it for many years because I know what it will do to me in the long run."
One of her greatest sources of frustration is her awareness of the dire medical complications that can occur because of her actions. Still, despite her medical knowledge, the temptation to keep eating and to omit insulin in order to stay thin is irresistible.
"I developed neuropathy and retinopathy. It was so scary that I would stop omitting insulin and try to reverse the complications - and I would for a short time - but then I'd always fall back into it."
A Thinner World
You see them on billboards and in glossy fashion magazines - models with sunken cheeks and boyish limbs who look as if they exist on the edge of starvation.
Forty years ago, a curvaceous Marilyn Monroe was the feminine ideal. Now young girls look up to angular beauties like Calvin Klein model Kate Moss.
"Researchers went through Playboy magazine," says Polonsky, "and they could see how the average weight had dropped in the playmates over the years. As our ideal woman becomes thinner and thinner, the pressure on women grows every year."
Adolescent girls are the most susceptible to these unrealistic portrayals of women. Girls on the verge of adulthood often struggle with self-identity and self-esteem issues. This is why they are the most common age group affected by eating disorders.
Mary, age 17, was diagnosed with type 1 her sophomore year of high school. She was already watching her weight and on a diet when the pounds started to rapidly disappear. Much to her disappointment, this wasn't the effects of her strict diet: it was diabetes.
Back at school, she enjoyed friends' praises about her weight loss. "People's comments on my thinness and the attention it created caused a snowball affect. I began to love the idea of being thin," she remembers. Then her doctor put her on insulin, and she gained 15 pounds.
Unlike Jennifer, Mary didn't stop taking her insulin she stopped eating. "I'd go whole days and only eat a little yogurt," she says. Eventually, Mary at 5'6" was down to 102 pounds. The favorable comments became concerned looks and whispering in the hallways at school.
"My friends and family started saying, 'you're too thin,' and my doctor was very upset. She said if I lost two more pounds I'd be hospitalized," she says. "Everyday I'd look in the mirror and be embarrassed by the way I looked - but not enough to start eating."
Margaret Wilkman, RN, MPH, CDE, from Duke University, agrees that people with diabetes are especially susceptible to eating disorders. "Diabetes is such a set-up for eating disorders. People must be conscious all the time of what they eat, then they feel guilty for straying from their diet plan."
"I wasn't preoccupied with food until I developed diabetes," says Jennifer. "After that, I thought about it all the time. Breaking my diet even a little, would trigger a binge on the foods I wouldn't normally allow myself to eat. Then I'd tell myself that tomorrow I would be perfect again."
Consequences & Complications
The stress of day-to-day diabetes care can cause many to become fixated on the notion of being the perfect diabetic.
"For many years I wanted to be the perfect diabetic. The problem is you can only be perfect for so long," says Jennifer.
Battling an eating disorder is a full-time job. A person may have difficulty maintaining their daily life, and often they'll miss out on days of work or school.
"I would wait for the days when not much was demanded of me at work," remembers Jennifer, "then I'd cut my insulin dosage. I'd deal daily with the sickness and nausea in the morning, chase the highs with some insulin and then recover in the afternoon."
Anorexia was interfering with Mary's life to such an extent she was afraid she wouldn't be able to go to college. "One of the main reasons I finally got help was that I realized if I wanted to go to college and be successful, I would have to get better first."
Besides the mental anguish that eating disorders can cause there are also numerous physical complications.
Complications that may occur because of anorexia or bulimia include anemia, renal and kidney failure, oedema (swelling), osteoporosis, low or high blood pressure, liver failure and infertility to name just a few.
In addition, people with diabetes and eating disorders must contend with a variety of diabetes complications such as frequent cases of diabetic ketoacidosis (DKA), wildly erratic blood sugars and recurring severe hypoglycemia.
Studies have also shown that complications such as neuropathy were as high as 41 percent in insulin omitters opposed to 16 percent in those who took their insulin regularly.
"I don't doubt that my complications probably stem from omitting insulin for so long," says Jennifer, who at age 40 has had laser surgery on her eyes as well as neuropathy in her feet and autonomic neuropathy.
People with diabetes often have unique concerns when it comes to eating disorders. This is why it is important to seek help from a qualified professional who understands not only eating disorders, but diabetes as well.
"I was so desperate to get better, but I couldn't do it on my own," says Jennifer. "Luckily, I found a good psychologist who understands the special needs of people with diabetes and eating disorders. I wish I had found someone sooner."
Unfortunately, very few mental health professionals or eating disorder clinics are familiar with diabetes. "Sadly enough, I don't think there's an in-patient program in the U.S. where adults with diabetes can get the special treatment they need, so often they don't even try," says Polonsky who obtained his CDE credentials while working as the senior psychologist at the Joslin Center in Boston.
Claire Mysko, the outreach director at The American Anorexia/Bulimia Association, receives about three calls a week regarding diabetes and eating disorders. "We give them a referral list of psychologists. However, right now we're lacking in professionals that are knowledgeable about diabetes. Not enough attention has been given to people with diabetes and eating disorders, but we're working on fixing this," says Mysko.
To help fill this void Polonsky hopes to someday establish a one week camp where people with diabetes can get day-to-day counseling from medical professionals on their eating disorders.
Mary is in a treatment program and dealing successfully now with her anorexia. At first, her psychiatrist wasn't very aware of diabetes, "however he has learned a lot about it through me," she says.
In addition to seeing her psychiatrist, Mary also attends an eating disorder group at her high school. "The most helpful thing is just to have somebody who listens and who understands," she says.
"Eating disorders are a way for a person to deal with the unhappiness and disappointment in their lives," says Wilkman. "It's important to remember that you can't change life events but you can change the way you think about them. A therapist can help you figure out which events trigger your eating disorder."
Polonsky stresses the importance of starting with small steps. He also asks that his patients keep binge records so they can keep track of times when they have low self esteem or when they feel emotions that they are not comfortable with. "The most important thing is to make peace with yourself," he says, "and especially for those with diabetes to make peace with food."