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.
Diabetes sufferer Lee Ann Thill, 34, looks at her insulin
pump after using her glucose meter to check her blood sugar at her home in
Magnolia, N.J., Monday June 11, 2007. [AP]
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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.
Don't you realize you could die if you skip your insulin? the counselor
scolded. Don't you know you could fall into a coma or damage your kidneys or
your eyes?
But that's not what registered with Thill, who has Type 1, or juvenile
diabetes. Instead, she focused on this: Skipping insulin equals weight loss. For
the next 17 years, diabulimia was her compulsion.
"I took just enough insulin to function," said Thill, now 34, of Magnolia,
N.J.
Today, she worries about the long-term damage that may have come from her
weight obsession. At 25, a blood vessel hemorrhage in her eye required surgery.
At 28, doctors told her she had damaged kidneys.
"I'm fearful for the future," Thill said. "I feel very strongly that had I
taken care of myself, I could have lived as long as anyone without diabetes. I
don't think that's going to happen now."
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. But "diabulimia" is a term that has only cropped up in
recent years and is not a recognized medical condition, said Barbara Anderson, a
pediatrics professor at Baylor College of Medicine in Houston.
Type 1 diabetes is a disorder in which the body's own immune system attacks
insulin-producing cells in the pancreas. People with this disease produce little
or no insulin, so they take shots of the hormone daily.
It differs from Type 2, the form associated with obesity and which accounts
for about 90 to 95 percent of all diabetes.
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.
Warning signs for diabulimia include a change in eating habits - typically
someone who eats more but still loses weight - low energy and high blood-sugar
levels, Goebel-Fabbri said. Frequent urination is another signal. When sugars
are high, the kidneys work overtime to filter the excess glucose from the blood.
This purging of sugar from the body through the kidneys is similar to someone
with bulimia, who binges and then purges, or vomits, Anderson said.
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.
Jacq Allan, 26, of London, is a diabulimic. When recently interviewed, she
said she had not taken her insulin shots for two weeks and rarely takes them
regularly. She weighs 42 pounds less than she did a year ago.
Allan is stuck between two fears: taking insulin, which may lead to weight
gain, and the damage her destructive compulsion is doing to her body.
"I'm terrified of insulin," Allan said. "Every morning I wake up and think
maybe I should go to the hospital."
Diagnosed with Type 1 diabetes nearly three years ago, Allan said she can
feel the constant, sky-high sugar in her blood. Her list of ailments - chest
pain, heart palpitations, muscle cramps, bacterial infections and lower back
pain - are not the usual health problems of a twenty-something.
"I'm constantly worried that my eyes are going to go, but they seem
relatively OK for the moment," she said. "I always wonder if this will be the
day that some major organ fails. I kind of want something to happen because then
maybe I'll stop."
Gwen Malnassy, 21, of Santa Monica, Calif., detailed her struggle with
diabulimia for three years in a diary she posted on the Internet.
"If you don't think it will happen to you, don't fool yourself," writes
Malnassy, diagnosed with diabetes at 9, in her final entry 11 months ago. "I
believed the same."
Doctors diagnosed Malnassy with both anorexia and bulimia at 13, she said.
"I would look at magazines and think that if I looked like the models, I
would have more friends and be more popular," Malnassy said in a recent
interview.
She began withholding insulin at 17 after learning of the practice during a
doctor's visit and continued withholding insulin off and on until last year.
Malnassy continues in her online diary: "I will say it again. Reach out; get
help. Do not fall; do not let the disorder consume you. It's a miserable way to
exist."