But they’re also telling cautionary tales. A young woman identified
only as "Goddess G" posted hers on a site called Anorexic Web. Just
released from an in-patient dual diagnosis program in California where
she was rescued for the umpteenth time, G.’s 2004 post begins:
Just got out of the hospital. I nearly died from
insulin manipulation. The docs said if I had come in the next day I
would have been dead.
What follows is a cyclic tale of bingeing (consuming, she says, "up
to 40,000 calories a day," including 14 liters of sugary soda) that led
to constant acid reflux, hair loss, dehydration, collapse and a heart
attack while still in her teens. The piece ends with a description of
her most recent round of recovery and relapse. After coming back from
an esteem-boosting three and a half month stint in the hospital, she
was broken back down by her home environment and a verbally abusive
boyfriend:
In about five months, by skipping insulin, I
lost my friends, my health, my hair, my happiness, and sense of
security in life. But I also went from 126 to 80 pounds…
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.
Katie, the former gymnast who is now married and a stay-at-home
mom, has had a happier outcome — so far. She was admitted to the
Eating Disorders Institute in 2003, one of its pilot diabulimia
patients. (Note: Park Nicollet was unwilling to allow an interview with
any patients receiving ongoing treatment and would provide only an
interview with a patient deemed "cured." So Katie probably is not
representative of this patient group at large.)
"They didn’t understand diabetes," she says. "I was one of the
first [diabulimics] to enter their program and I challenged them to
recognize what a weird struggle this was for me. For instance, I was
told never to look at numbers or labels. But I have to look at the carb
number on a food, or I won’t know how much insulin to take. I can’t get
around the numbers."
Ultimately, the therapist working with Katie brought in a dietician
to help develop an eating program that took her diabetes into account.
And the staff at the EDI learned about the unique ways the diabetic
body responds to sudden dietary changes and scheduled insulin
injections.
One thing they learned to anticipate: the hysteria of eating
disordered patients who take their insulin and awaken the next morning
looking pregnant. Because unlike the otherwise healthy patient with an
eating disorder — who might put on two to three pounds a week when put
on a standard food plan — someone with diabetes can gain 10-20 pounds
in a week. Most of this is much-needed water, but it causes the body to
swell and the stomach to "pouch."
After treating Katie and several other early patients, the doctors
at Park Nicollet began collaborating in a way that few healthcare
organizations can. Bergenstal and Jahraus assembled a team of
practitioners from both sides (the IDC and the EDI) to develop a
curriculum specifically for the treatment of diabulimia. It includes
regular screenings for blood glucose levels and ketoacidosis, food
plans that allow for label reading, diabetes education, a private space
for patients to give themselves insulin injections, and a separate
support group where the problem of having both diseases can be freely
discussed.
In November, Park Nicollet will break ground on the Melrose
Institute, a new facility for the treatment of eating disorders that
will be one of the largest in the country. Bergenstal and Jahraus say
they plan to standardize care for diabulima and — once it’s been
adequately tested — publish their curriculum so other eating disorder
centers can treat the disease.
However, Katie admitted during our interview that even after she
left the EDI in 2004, she was inconsistent about taking her insulin.
She knew exactly what she was supposed to do. But when she was under
stress, or her clothes started to feel tight, she’d go back to eating
bags of Doritos and entire cakes and skipping her shots. It was only
when she became pregnant for the second time, in 2006, that she started
following her eating and insulin plan.
Now, nine months after the birth, Katie swears she’ll never go back
to her old ways. But the pressure is there every time she steps on a
scale or goes shopping for clothes. All she has to do if she wants to
take off that last five pounds of baby weight and slip into a pair of
low-rise jeans is omit her insulin for a few days. Can she really be
expected to resist the temptation? Could you?
First published on Salon.com.