Be thin or die shouldn’t be the options
This latest news story brought out of the closet what has been increasingly noted in the medical literature for more than twenty years. Growing numbers of young people are knowingly choosing to risk blindness, limb amputation, kidney failure and death rather than be fat. Just what they’re doing to control their weight is something no one’s wanted to speak about for fear of giving more young people ideas, but it’s too late for that.
Family members, healthcare providers, teachers and friends of young people need to know about this because few understand it and we’re the ones in a position to recognize it and save a life. Those caught up in it can’t always stop on their own.
First the news:
Like many teenage girls, Lee Ann Thill was obsessed with her appearance. A diabetic, she was already suffering from bulimia - forcing herself to throw up to lose weight. But it wasn't enough, and she'd recently put on 20 pounds. Then one day at a camp for diabetic teens, she heard counselors chew out two girls for practicing "diabulimia" - not taking their insulin so they could lose weight, one of the consequences of uncontrolled diabetes....
Diabulimia is usually practiced by teenage girls and young women, and it may be growing more common as the secret is exchanged on Internet bulletin boards for diabetics and those with eating disorders. One expert who has studied the phenomenon estimates that 450,000 Type 1 diabetic women in the United States - one-third of the total - have skipped or shortchanged their insulin to lose weight and are risking a coma and an early death. “People who do this behavior wind up with severe diabetic complications much earlier," said Ann Goebel-Fabbri, a clinical psychologist at the Joslin Diabetes Center in Boston.
The American Diabetes Association has long known about insulin omission as a tactic to lose weight. ... Insulin is vital for delivering glucose from the bloodstream to the body's cells. Without insulin, cells starve even while the bloodstream becomes burdened with too much glucose. When Type 1 diabetics skip or reduce their insulin, they risk falling into a coma or even dying. Blindness, amputations and kidney failure are some of the long-term complications that can develop...
Studies show that women with Type 1 diabetes are twice as likely to develop an eating disorder. Ironically, good diabetes management, which requires a preoccupation with food, counting carbohydrates and following a diet, may lead some to form an unhealthy association with food, Goebel-Fabbri said.....
The constant “thin is in” message that surrounds young people today — with its nonstop talk of dieting, “healthy” eating, the dangers of obesity or virtues of thinness — confronts diabetics, too. But the popular dieting behaviors that can naturally physiologically lead to the eating disorders and dysfunctional relationships with food that’s ravaged the lives of countless numbers, are especially inescapable for diabetics. Managing their diabetes means they’re constantly focused on food and controlling their eating, which sets them up for clinical or subclinical eating disorders. Compound that with fears of being fat and the fact that good glycemic control is associated with weight gain, and it’s no wonder that growing numbers are resorting to such drastic measures to lose weight.
The concentration on their diet and restrained eating serves to simultaneously increase a drive for thinness. As researchers at the Royal Infirmary in Edinburgh found, just one year after being diagnosed with diabetes, both male and female young diabetics demonstrated an increased drive to be thin, and all of the females became dissatisfied with their bodies and inappropriately saw themselves as too fat. A destructive spiral had begun.
Clinicians began reporting about diabetics with eating disorders in the 1980s, although the disorders didn’t meet recognized definitions and early efforts to understand the problem were hindered by case reports and small sample sizes. But over the years, it’s been repeatedly shown that diabetes precedes eating disorders in 80% of these cases, with the earlier the diagnosis and initiation of dietary restrictions, the more significant the problem. Diabetes increases the risks for anorexia nervosa by six-fold.
Like all those suffering from disordered eating, you can’t tell by looking at their weight. Some can be within “normal” weight ranges or even fat, yet below a range normal for their bodies, and still be at serious health risks due to unhealthy weight control behaviors. Diabetics with eating disorders are no different. However, because of the diabetes, diabetics themselves are more likely to be heavier than their peers. Swedish researchers found that type 1 diabetic teen girls, ages 14-18, were 15 pounds heavier. But it’s not their weight that determines if they’re at higher risk for disturbed eating behaviors, it’s their diabetes, according to the Edinburgh researchers.
Toronto physicians followed 91 diabetic women for up to five years and found that eating disorders were common, with 30% of them having it at the start of the study and another 14% going on to develop it. Worse, their study, published in the New England Journal of Medicine in 1997, reported that omitting or underdosing of insulin to lose weight was practiced by 34% of the young women who had developed diabulimia. Tragically, within just four years, 86% of those diabetics with such highly disordered eating behaviors had developed retinopathy — nearly a four-fold increase over those free from this disorder.
A much larger study conducted by these same researchers five years later, involving 356 teenage girls with type 1 diabetes and 1098 matched controls, found that eating disorders (per DSM-IV definitions) were nearly two and a half times as common among type 1 diabetics as compared to nondiabetic peers. They reported: “In subjects with diabetes, deliberate insulin omission was the most common weight loss behaviour after dieting….11% reported that they were currently taking less than their prescribed dose of insulin to lose weight. Fifteen (42%) of the diabetic subjects with an eating disorder reported insulin misuse.”
Diabetics suffering from eating disorders or using insulin for weight loss can result in poor glycemic control and the long-term complications of diabetes show up much earlier, including significantly higher incidences of neuropathy.
As a young recovered diabulimic, Christina Hanford, said in a wonderfully open and helpful interview for Diabetes Teen Talk:
I started losing tons of hair. My skin was incredibly dry. I was constantly cold. I developed osteopenia. Basically, I am in the early stages of osteoporosis. I had VERY high HA1C [hemoglobin A1C] levels. I didn't menstruate for almost three years, which is actually really bad for your body. I wasn't producing estrogen. My electrolytes were all messed up. I had constant cramps from lack of potassium. I'd wake up in the middle of the night literally screaming in pain. And my uterus shrank to three times the size it should've been. I also got heart damage. My valves started to leak. Fortunately, it was able to repair itself over time. But my heart looked like that of a really old person.
She said that she’d probably been diabulimic for longer than she realized but that she didn’t really see what she was doing to herself. “I don't think I really acknowledged to myself how terribly dangerous this whole thing was,” she said. “I mean, it's so deadly. I was playing with my life every day.” But while caught up in it, she said: “I denied the consequences of what I was doing to myself. I shoved it aside. I didn't want to think about it. I was too consumed in the eating disorder and diabulimia.”
If anyone doubts the seriousness of diabulimia, the story of a young woman diagnosed with diabetes as a child, then anorexia which sequed into the dangerous, life-threatening game of withholding her insulin, will change your mind. It was shared by Lisa Arndt, MA, a therapist at the Center for Discovery and Adolescent Change, a California intensive residential specialty program for eating disorders. Here is just an excerpt, but it is well worth reading in its entirety at her website, Anorexiaweb.com:
To be 18 years old and know you are dying is scary. To know that taking a few injections of insulin would solve that problem but that I am too cowardly to do that is even harder. Why? Because I learned that manipulation my diabetes is a ‘great' weight loss technique. If you are a diabetic, skipping your insulin is another form of purging....
I was diagnosed with diabetes at age nine, and was very obsessed about being the “perfect" diabetic. I would even purge to keep a lower blood sugar. By age 11, I was extremely obsessed with food and weight, and by age 12, I was in therapy....I skipped all my insulin but two units at night, sometimes only one. I would consume up to 40,000 calories a day, purge maybe half, and pee the rest out. My muscles deteriorated. My hair fell out, and many nights I couldn't breathe. In February (2003) I had a heart attack...My days became consumed with EKGs, getting labs taken, and doctor visits. I was so dehydrated that if I did venture to take my insulin I would gain so much as fifteen pounds of water overnight, so I quit trying....My blood sugars were constantly ovver 1,000 and I was too weak to do anything but binge and sleep. I would fall asleep anywhere, from lack of insulin and severe dehydration, even though I drank about 14 liters of soda a day, and two gallons of water....
I still do it, and I can't stop. Is it worth it? My bones are weak, I have sores on my mouth, my hair is thin, my heart flutters, it is a struggle to walk, and the docs say I will need dialysis and eye surgery by the time I'm twenty. I am 18, and I live in a 90 year old body. So if you have diabetes, please, don't start, because once you do, you can't stop. Diabulimia, how I loathe thee.
While this is a tragic case, it highlights that diabulimics can go for some time with no one the wiser, eating lots and appearing a normal weight, while they get steadily deeper into trouble. This weight loss technique is increasingly mentioned on internet diet sites that attract teens and young adults. But in reading the boards, one is most struck by how many echo the same stories: they know what’ they’re doing is dangerous and that they’re hurting their bodies, but admit they’re unable to stop. Even though they’re crying out for help, they say few understand and that it’s really hard to find someone who will help them. One wrote: “No one seems to understand. My doctor and family just lecture me about my high blood sugars, but they don't know that I'm bulimic and diabulimic.” Another said: “I think part of what made it so hard was that health professionals really don't understand it. I knew I had an eating disorder and I wanted help, but I didn't know who to talk to. My endocrinologist didn't understand eating disorders and the eating disorder people didn't understand diabetes.”
As Ms Hanford said, the problem that most therapists “don’t understand this disorder” had serious consequences for her. The therapists she saw weren’t knowledgeable of the medical management of diabetes or aware of how diabetes so closely relates to eating disorders. “I continued the behavior because of it.” Most diabulimics are girls and they get into trouble as they enter teen years because, of course, part of normal pubertal development is filling out with a more womanly shape and naturally gaining fat, which sparks added weight concerns. Young males, especially those in weight-focused sports also become diabulimia. Chastising young diabetics to lose weight or increasing their weight concerns in any way is the very last thing that’s helpful.
The take home lesson for anyone who knows a young person, whether or not they’re diabetic, is to first recognize the harm of today’s diet and thin-obsessed environment and understand these complications, according to doctors Ira M. Sacker, M.D. and Marc A. Zimmer, Ph.D. in Dying to be Thin. Most often, the early signs of anorexia or other eating disorders are missed because everyone is happy for the person involved in “successful” dieting or “taking more responsibility for managing his/her food intake. That generally positive feeling can prevail to the point where it is very difficult to see that the person's eating habits are really not appropriate at all.”
When healthcare professionals find worsening glycemic control, it can be life saving to recognize this as a sign of progressively escalating eating disorders and diabulimia, cautioned the Toronto researchers. Their study, published in the British Medical Journal reported that mean hemoglobin A1c levels in teen patients with an eating disorder was 9.4% — higher than in patients with no disordered eating patterns (8.6%).
Friends, family members, teachers, coaches and healthcare providers can do more than they think to help prevent or recognize when a young person needs help with an eating disorder, said Drs. Sacker and Zimmer: “You may know a young girl who is going through puberty right now. She's probably very involved with the physical changes in her body. And if those changes surprise you, imagine how they must surprise her! If that young girl feels that her physical development is somehow ugly, she may believe she can eliminate those changes by dieting away any chance of growing up at all.”
In other words, help them recognize and appreciate the natural bodies they have and avoid the popular beliefs that they must lose weight or die.*
The advice Ms. Hanford offered other young diabetics was amazingly insightful:
What's so important for teenage girls that are diabetic and considering doing this to themselves is to realize that they are a human being worthy of living a happy, healthy life. If people get the urge to play around with such a deadly matter, they really need to talk about it with family or friends, and see a counselor or therapist. This will kill you. Nobody deserves to suffer.
© 2007 Sandy Szwarc
* A resource for diabetics and their families and diabetic professionals is the Fat-Acceptance Diabetes Support group which helps those of all ages, gender and size.