This is my diabetes kit. Dealing with the blood-sugar testing, hypoglycemic episodes, insulin-pump management and/or insulin injections is no party. But the consequences of NOT dealing with them are severe.
A couple years ago, I got a dreadful sinus infection, found myself trotting to the bathroom several times an hour, and dropped about 15 pounds in six weeks. I had developed Type 1 diabetes (a.k.a. insulin-dependent or juvenile diabetes). It felt weird to tell friends about my new disease. But the conversations kept bumping to an awkward halt, right around the time the other person said — and I am not making this up — “You lost 15 pounds? God, you’re lucky.” After I’d just explained that I have a chronic disease.
Not long after that, my sister called me and asked, “It’s really bad if you don’t take your insulin, right?” I launched into an explanation of the disastrous things that can result if a Type 1 diabetic doesn’t take insulin. She had a new friend, a woman in her 30s, who was diabetic and systematically did not treat it. The friend was obsessed with being skinny, my sister told me. It was the first time I even contemplated deliberately abusing this disease in the pursuit of the waifish figure I’d recently acquired.
Evidently there’s a name being (informally) used to describe the practice: diabulimia.
I have often said that I can’t imagine what it would be like to have this disease as a teenager. The urge to treat it like a new variety of eating disorder would be so tempting, especially in light of the compromised self-confidence that can be a side effect of a chronic disease.
But stop and think about the reason an insulin-dependent diabetic loses weight if she doesn’t take her insulin: The body doesn’t have a way to convert sugar into energy, so the body instead devours muscle and fat, in the process drastically weakening itself and kicking a large amount of toxins called ketones into the bloodstream. Meanwhile, the sugar that’s left adrift in the bloodstream is merrily wreaking havoc on as many organs and systems as it can.
The side effects of uncontrolled diabetes — aside from ketoacidosis, slow starvation, coma, and death, include nerve damage, kidney failure, heart disease, and blindness. As a woman, it’s dangerous to conceive a baby if you have high blood sugar because the fetus can develop severe birth defects; the rate of miscarriage is also higher than in the general population.
Being thin could never be worth any of that. I’ve said that in some ways I feel lucky to have Type 1 diabetes, because an enormous component of the treatment is simply leading a healthy lifestyle: eating mindfully, staying active, being aware of what’s going on with my body and asking questions when I have them. I realize that those people who said I was lucky to have a disease whose side effect was uncontrolled weight loss were just toeing the party line of our expectations of our bodies. Shouldn’t the main expectation be health?
Alison Aves is a professional writer, editor, and diabetes handler living in the San Francisco Bay Area. She can be contacted at firstname.lastname@example.org.