The stress on the kidneys is magnificent — the equivalent of
stuffing an entire Thanksgiving dinner, turkey bones and all, down a
garbage disposal, daily — and requires a very high water intake to get
the job of flushing everything out done. Thus, the symptoms: chronic
thirst, frequent bathroom visits, severe dehydration, an electrolyte
imbalance that can lead to heart irregularities (remember Terri
Schiavo?) and, ultimately, kidney failure.
Katie experienced all of those but the last. She spent hours in the
bathroom and her heart skipped beats. Yet, she kept on, letting her
blood sugars creep higher and higher, losing more and more weight. "The
other girls on my dorm floor were so envious," she says. "Every time
they saw me I was eating something and I was still about a size two."
So imagine your body has this particular glitch. You’ve read this
far, you know the dangers. Using a walker for the rest of your life.
Waiting for a kidney transplant. Being hooked up to life support in a
vegetative state while people picket outside your hospital room,
shouting about whether or not your life should end.
But would you do it? Just for this weekend, just for one dance
audition, just for your wedding so you can wear that incredibly
close-fitting princess waist dress? Would you convince yourself it was
only for a couple days? After all, there are a lot of undiagnosed
diabetics who walk around with high blood sugars for weeks or months
before they’re caught. You don’t have to restrict yourself; you don’t
have to vomit. All you have to do is "forget" to take your next shot.
This is the temptation thousands of young people with diabetes
face. Diabulimics can eat delicious, fattening foods and remain thin,
or they can live by draconian rules and battle to squeeze into their
clothes. There are consequences to the first option, but to a teenager
they may seem vague and a long way off.
What’s more, their doctors scold them if they gain too much because
additional pounds mean more stress on the body and a greater need for
insulin. And their blood sugar levels are checked not only four times
daily, but also every three months using a test called A1C, which shows average
glucose going back 10-12 weeks.
It’s the ultimate Big Brother situation: You’re 16 and there’s a
bearded man in a white coat who’s telling you exactly how much you
should weigh and how he wants your body to behave. You’re supposed to
keep tabs on every gram of sugar and record it in a little diary. The
other kids you know can eat a Twinkie without having to report back to
a committee. It makes you feel — rightly — as if you have no control.
It also makes treating Type 1 diabetes a very tricky balancing act.
The mortality rate from diabetes alone is roughly 2.5 percent
annually. For anorexia nervosa, it’s 6.5 percent. But patients with
diabulimia — which is referred to in healthcare circles as "dual
diagnosis" — have a mortality rate of a whopping 34.8 percent, per year.
"Both diabetes and eating disorders are high-risk conditions," says
Dr. Joel Jahraus, director of the Eating Disorders Institute (EDI) at
Park Nicollet Health Services in St. Louis Park, Minn., one of the few
centers in the country with a program specifically to treat
diabulimics. "But put them together and the risks are just wildly
incremental."
According to anecdotal research done at Park Nicollet, patients
with diabulimia routinely suffer from retinopathy, neuropathy,
metabolic imbalance, depression and other mood disorders, kidney
disease and heart attacks. "High blood glucose triggers a series of
mechanisms that injures blood vessels and nerves throughout the body,"
says Dr. Richard Bergenstal, director of the International Diabetes
Center (IDC). "It affects everything vascular, which means it’s the
leading cause of blindness, kidney failure and amputations."
For females in the general population, the risk of developing an
eating disorder during college is between 20 and 40 percent; for those
with diabetes, it doubles. In a recent study conducted by the EDI, of
87 patients diagnosed with diabetes in childhood, 36 percent admitted
to misusing insulin in order to control their weight — but only when
they were asked a decade later.
Whether diabulimia is on the rise or only now being noticed,
experts cannot say. What they do know is that more and more patients —
mostly young women — come to them every year with the signs of
voluntary insulin deprivation. It’s become a standard question for
diabetes specialists to ask patients with high A1C results. And it’s
now listed in the DSM-IV (Diagnostic and Statistical Manual of Mental
Disorders) as a separate illness with criteria specific to
insulin-dependent patients.
Some doctors theorize that the Internet is partly to blame: Teens
with diabetes are posting information about insulin withholding, they
say, much as young women have traded dieting tips and guidelines for
traditional purging techniques (vomiting, laxative abuse, excessive
exercise) for many years.