It may just be my particularly warped brand of thinking, but I feel like people with diabetes have to deal with a tremendous amount of judgement. There are callous doctors and other health care professionals, there are ill-informed journalists who don’t bother to differentiate between Type 1 and Type 2 diabetes — and the genetic factors that contribute to both — in their “Diabetes Freak-Out of the Week” stories, and then there’s that dude in your office who expresses concern any time he catches you eating anything other than chicken broth or watercress.
This may be where my paranoia starts to show itself, but I’ve recently identified another source of diabetes judgement: the people who wouldn’t dare question your eating or health habits to your face, but are full of stories of those other diabetics they’ve known, The Ones Who Didn’t Take Care of Themselves.
“That’s great that you’re checking your blood sugar,” they’ll say. “I went to middle school with this girl who had Type 1 diabetes, but she had it real bad and she had to eat candy in class sometimes. She was always in the hospital.” (These stories may or may not end with the diabetic in question losing the function of one or more organs or limbs.)
There was a time when I might have gone along with this. I’d nod, and offer up some snippet of my daily habits that would portray me as the Diabetes Superhero we all aspire to be. “That’s too bad,” I’d say. “I check my blood sugar at least 37 times a day. And I never have to eat candy.”
But the more people I know who are living with diabetes, the more I recognize that even quasi-successful diabetes management is a full-time job, the less tolerance I have for these stories of anonymous terrible diabetics of the past.
And if these people are telling me about what constitutes good and bad diabetes care in others, what are they telling other people about my diabetes management skills — or lack thereof?
“I knew this girl named Jacquie. She spelled her name really weird and one time she drank whiskey and got stuck in her bathtub. And she has the bad kind of diabetes, so she should know better.”
I realize the people who share these stories are only trying to relate — to broach what can be an awkward topic. I get it, and I appreciate that.
But (and this may be all I need to start saying to people), diabetes is fucking hard, yo. You may think you’re observing a person who’s neglectful, or lazy, or irresponsible — and all of that may be true. What’s definitely true is that you’re observing a person who is struggling to manage a very complicated (and expensive) disease with a bazillion counter-intuitive rules and exceptions to those rules. Diabetes is like the English language of diseases — it’s ugly and it’s hard to understand, and the things that you’d expect to make sense don’t.
I don’t have an answer for these people. I wish diabetes was predictable and easy enough to control that we could have distinct categories for the “good” PWDs and the “bad.” That way, successfully managing an active life with diabetes would be like paying taxes — either you did it or you didn’t. And if, say, you went a few years without doing what you were supposed to, there was some 1-800 number from a sign on the side of the road that you could call to make good with the Gods of diabetes. An insulin and carbohydrate payment plan, maybe. Anyway.
It’s exactly this confusion and (perhaps unintentional) judgement that makes me want to keep trying to explain life with diabetes to as many people as I can. It can be frustrating, but it’s usually worth it. Hopefully, people won’t judge me — or anyone else — for not being perfect at diabetes management, and we won’t judge them for not knowing how complicated it is.