The Things They Don’t Talk About at Parties

It’s bad enough to be diagnosed with a chronic or autoimmune condition. After the initial rush of fear, anger, and anxiety about what it means, there’s a period of adjustment during which you learn your disease. You get your prescriptions, your devices, the plan your doctors recommend, and then you have to ratchet it into your life. There’s a lot of trial and error. And if it doesn’t work, you start playing with what you’ve got.

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For me, that manifested itself in something called diabulimia, an eating disorder where you don’t take enough insulin to cover your food intake and basically end up starving yourself because your body doesn’t have the tools to absorb what you are eating. One article I read years ago compared the damage done to your kidneys to putting an entire turkey – not a chicken – down your garbage disposal every day. Like any eating disorder, your body will start to shut down if it doesn’t get what it needs, but the damage is accelerated because of the already-impaired immune system.

Into the woods

I was diagnosed with Type 1 diabetes when I was 14, a very vulnerable age for girls and boys. I had never been thin (it’s just not my genetic build), but before my diagnosis I weighed about 90 pounds. It was just when women’s clothes were vanity sized into size 0, and even that was a little loose. Everyone – teachers, friends -- told me how good I looked. Funny how my parents never did. They must have been worried to see me eating about 5000 calories a day and still be that thin.

When we finally figured out it was diabetes, doctors put me on a 2500 calorie diet and wouldn’t take me off. I gained 60 pounds in six months, started associating insulin with weight gain, and hello, eating disorder. It lasted six years and almost cost me my vision (retinopathy) and my mobility (neuropathy), and did cost me at least 40% of my kidney function.

Out of the woods

I was lucky. We had a family friend whose wife was diabetic. When I started getting retinopathy, he arranged to send me to the Joslin Clinic, which is the gold standard for diabetes research and treatment. They helped pull me out of it.  I was 20 by then. If I had continued, I would have killed myself eventually.

Apparently, diabulimia is a fairly well-known phenomenon, although it is not recognized as a complication of diabetes either in the United States or the United Kingdom. I never heard a medical provider mention it until long after I’d been scared straight. Granted, my first endocrinologist was an egotistical jerk, but even as I pulled myself out of that very bad place, no one ever named it and told me that I wasn’t the only one.

There’s a danger in this lack of discussion. I suspect that teenagers aren’t the only diabetics vulnerable to diabulimia, and I suspect that other chronic and autoimmune conditions have equally dangerous potential when we stray from medical advice – I’m looking at you, opioid addiction.

Don’t get me wrong. Being able to understand your body and manipulate your treatment can be vital to living your best life, but there are many paths you can take and not all of them are healthy. If your mind isn’t healthy and you are suddenly handed a tool you can use to get you what you think you want, like an “ideal” body weight, it’s just so easy to take the unhealthy path.

A good provider and a good therapist may have been able to keep me from that path, or at least shorten the duration. If we had known the danger, if we had been able to put a name to it to understand it, we would have been able to see the path out of the woods. It’s a lot harder to remain in a dark place when you can see a path toward the light.