The Stigmata of Diabetes

Emphasis here not on the physical so much, but on the emotional and mental stigmata of diabetes. Oh, and clarification may be needed, as well, so that you know up front that I’m referring to stigmata in the lowercase "c" catholic sense, using it simply as the plural of stigma in a nonreligious way.

Stigmata just sounds cool, but now that I’ve used it several times, I’ll transition back to stigmas.

stigma (acc. to dictionary dot com): a mental or physical mark that is characteristic of a defect or disease.

The question, then: What are some stigmas you’ve felt or experienced as a person with diabetes?

Please feel free to answer that in as little or as much detail as you’d like (or at least in as much detail as the comments section permits). Be anonymous, even, if you’re more comfortable with anonymity.

I was asked this question on Tuesday night while Kathryn and I were at dinner with the medical students assigned to us this year for the University of Michigan’s Family Centered Experience (FCE) program. (Here are some of the blog entries, among others, in which I’ve written about the FCE.)

Emily and Michael are second-year medical students at U of M, and this was our second meeting. While we miss Megan and Andrew — the first-year students we had for the 2007-2008 school year — we’re really enjoying Michael and Emily’s company.

After a half hour or so of reacquaintance conversation that rarely touched on diabetes, we turned to the task at hand: helping them understand what it’s like to be a person with a chronic illness.

My first reaction to the question was to say that I’ve never really felt stigmatized by having Type 1 diabetes. My first reaction. I think I leapt to this response because I initially thought that a stigma would have to be something I’d experienced from others, a shame or awkwardness because of physical manifestations of the disease, the junior high name-calling, the judgmental looks from people I don’t know. Discrimination, possibly.

Since I was diagnosed with Type 1 when I was 33, I didn’t and do not have any physical signs of having diabetes, short of wearing my insulin pump and having remnants on my abdomen of infusion sites past. Sure, you might catch me checking my blood glucose, but unless you know me and know I have Type 1 diabetes, you don’t know.

It’s difficult to look at anyone with diabetes and be able to pinpoint that what you’re seeing is a person who has diabetes. The nefarious nature of the condition and its potential to cause a multitude of complications means it’s often the condition behind the condition, rather than the disease with a public face.

But here’s one of my stigmas: When I was first diagnosed, I was concerned that when people found out I had diabetes they’d jump to the conclusion that I hadn’t managed my weight and that my diagnosis was something I might have prevented. In fact, several times when people learned that I had diabetes, they’d say, “But you’re not overweight,” or “Wow, you must have lost a lot of weight.” It was frustrating to hear this. I wanted to be able to educate them about the differences between Type 1 and Type 2 — and I’d often try to give a quick description of each, conditions that are vastly different. I’d talk about autoimmune disease, that my body attacked itself, that there was nothing I could have done to prevent this. Nothing.

Now, wait…before I get angry comments and lengthy diatribes about Type 2 from people with Type 2, reread the previous paragraph and see that I’m referring to “when I was first diagnosed.” I’ve since educated myself about all aspects of diabetes, and I know that weight isn’t the only factor in why a person gets Type 2. I know this.

There’s this “you did this to yourself, suffer the consequences” stigma that’s very present in our society. For me, I wanted to be removed from culpability, and I wanted it to have nothing to do with my weight.

And where’d that come from? Upon my diagnosis, I jumped back into a psychological past in which I never thought I was thin enough. Example: In college, while on the cross-country team and with less than 5% body fat (I recall at one point it was 3.7%) and the ability to run a mile in under four and a half minutes, I still thought I was overweight. Always thought I was overweight. When I was 19 or 20, I’d look in the mirror with my shirt off and see only excess fat on my stomach.

Just stymies me, the hell I put myself through and enjoyment I missed out on because of this.

So, yeah, stigmata? I’ve a few.