Diabetes Self-Management Blog

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.

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Comments
  1. Eric… I’m curious… during your “never thin enough” period with what sounds like dangerously low body-fat levels… were you following an exercise schedule that could have been considered indicative of “exercise bulimia” or a diet that could have been considered indicative of the early stages of anorexia nervosa?

    I’m curious because I’ve seen, read, and experienced enough anecdotal evidence to suggest that even a couple of months of this sort of behavior (too short a period to become clinically diagnosed) may affect our glucose metabolism much later on…

    The correlation is only anecdotal, but one that interests me personally.

    Posted by tmana |
  2. Dear Eric.

    I have labelled myself as LACK OF MORAL FIBRE. This is a WW2 Canadian airforce label applied to the poor sods that were no longer able to get into a Lancaster bomber and be shot to pieces by the Germans every night. 2/3 casualties in our aircrew with way more deaths than even in your 8 Army Airforce. I don’t think our airforce shot anyone for refusing but the peolple were certainly disgraced.

    Well I am no longer able to control how much I eat nor really the nature. Today I bought some very yummy looking blue cheese at Costco. Just what a diabetic needs.

    Well here is to LMF and usually I feel so tired that if someone had the courtesy to drag me out and … I would not mind. But I will never loose my sense of humour which is unfortunately becoming more and more of the gallows type.

    Posted by CalgaryDiabetic |
  3. Tmana…

    The low bodyfat was because of the training, but I was definitely eating enough… we had an all-you-could-eat cafeteria at the small college, and I remember that the cross country runners were easily able to outeat many of the football players.

    Posted by Eric |
  4. I haven’t felt any stigma, but I’m fairly newly diagnosed and haven’t shared the diagnosis with anyone but immediate family, my boss and my diabetes support group. I don’t think anyone else needs to know.

    Posted by Mal |
  5. You didn’t mention anything about stigma from the medical community. I sometimes feel that some “professionals” overlook problems with diabetics because we should be able to take care of them ourselves. When I had trouble with my first pump and landed in the emergency room I found little compassion and less knowledge about the pump or basic problem solving. They were giving me saline, when I had had no food, and too much insulin, it took my chemist-scientist husband to say stop the water, turn off the pump and give her juice the second time I finally came around. In general it seems that we older diabetics are a bother to the medical community, and if that isn’t a stigma I don’t know what is.

    Posted by oldtimer |
  6. Stigma? That’s my middle name. I’m under 5 ft tall, I’ve been overweight all my life, and I was diagnosed with Osteoarthritis at age 8. I’ve always walked with a limp due to a tilted pelvic bone and that has worsened dramarically as I’ve gotten older. I’m only 48, yet tomorrow I’ll be fitted for a knee brace because I’m “well beyond bone on bone” and my Dr and I want to put off knee replacement surgery a bit longer if we can. I have to use those motorized carts to shop now.

    Diabetic Stigma… Yes, since I am overweight I “did it to myself” even though its very prevelant in my family - including a very high percentage of aunts and uncles and cousins going back several generations as I learned at a family reunion!

    Posted by Ephrenia |
  7. I have been very fortunate to work with at healthcare provider who is an FNP and a CDE. When I went in last week to see her because my glucose numbers have been much higher that usual (I am a type 2, diagnosed a little more than 5 years ago), I commented that I hadn’t been very careful about my eating. She reassured me that the higher numbers were probably not my fault, but the progression of the disease. I haven’t heard about my blood work results yet, but suspect my insulin production is shutting down. I am not thrilled, but would rather use insulin than struggle with my numbers. I was overweight when I was diagnosed, but am no longer. I have a long family history of diabetes, so realize that I was probably doomed to develop it. I am glad that I have a provider who is well versed in diabetes management.

    Posted by Jill |

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