Diabetes Self-Management Blog

The stigma of diabetes. I wrote about this a little over a year ago, but because last night we had our new pair of Family Centered Experience medical students over for a visit — and because the topic of conversation was once again the stigma of disease — I’ve decided it’s time to revisit my thoughts on the subject.

But I’m not going to talk about the stigma I feel I endure because of my diabetes. No. I’ve already done that (see the link above!). Rather, I want to try to explain something I only began to realize last night while in the process of answering a question posed by one of the med students.

By the way, because I only began to realize it, try to explain is the operative phrase here. Forgive me in advance for any confusion in this entry.

I carry within me a spectrum of preemptive perceived stigma, a self-protective mechanism wherein I assume people are going to act towards me a certain way if they find out I have diabetes. This feeling that you probably have this idea about me because I have diabetes seems to be on alert most as I venture outside of my daily comfort zone. My friends and family know what’s what, and fortunately for me (because I am such a snob!) I spend my days working on a university campus surrounded by intelligent people who are interested in learning more about those things they’re ignorant of.

Well, OK, for the most part I’m surrounded by intelligent people, but we’ll save the debate about what kind of intelligence that is and all of its flaws for a later date. And true enough, there’s enough miseducation about diabetes not fifty feet from my office door.

Yet a person can grow calloused and quickly used to an ignorance close to home. It’s when I’m somewhere I don’t feel comfortable — an out-of-the-way diner, a restaurant on the interstate, a visit with new acquaintances — that I pull out my glucose test kit and insulin pump with a preconceived belief that the folks around me already have their facts wrong.

I have Type 1 diabetes, and I admit I suffer somewhat (still) from a desire to correct the disease-identification errors that makes people want to lump me into a Type 1 is the same as Type 2 crowd. I shouldn’t care, should I? What does this say about me? Am I prejudiced? A bad person? If the tables were turned and I had Type 2 diabetes and someone wanted to identify me as Type 1, would I be as quick to provide an elevator speech going over the differences as I am now?

You see, I’ve worked to disabuse myself of most of the preconceptions I once held about those with Type 2 diabetes. I’ve had to work at it. Educate myself. Read. Talk to people. Because I had preconceptions, I admit.

Prior to my diagnosis of Type 1, I didn’t give much thought to differentiation of types of diabetes; I had no reason to (this is probably the boat in which most people find themselves, I bet). Still, though, I have a knee-jerk need to want to implore anyone who expresses the mildest of passing interest in my condition to please, just get it right.

Why should I care, though? Why? It’s a legitimate question. Apart from my doctors and family and friends, who I think probably ought to know about this thing diabetes that takes over a fair amount of my day in thought and action, in preparation at meals, before exercise, even before a nap — pretty much this condition that by default inserts itself into everything — why should I care what others think?

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Comments
  1. Very well expressed and honest post. I feel much the same way, and hate the wall that I often throw up in anticipation of the coming judgement of others about my condition. Usually it is unwarranted, but yet automatic unless I make a conscious decision to drop the wall. I guess defense mechanisms are just that way.

    Posted by Carol |
  2. My husband and I are leaving on a 30-day cruise beginning April 10. I have been a type 1 diabetic for 23 years and have used an insulin pump for 3 1/2 years. I have traveled a lot in Europe and Mexico for extended periods. Planning is so important for travel, but something unexpected always happens! I have been able to take care of purchasing insulin and other supplies in different countries but my biggest challenge is my tendency to avoid testing with my meter before taking a basal dose–especially in a dining room with a lot of strangers. I am getting more comfortable with the idea of just educating people about what I’m doing if they notice and make a comment. I find that they are usually very interested in learning more about Type 1 and often thank me for informing them since they were unaware of the differences between Type 1 and Type 2. Try this if you haven’t done it before because it’s affirming and really strong positive reinforcement. And feeling better on a trip is certainly worth the effort, isn’t it!

    Posted by Marsha S |
  3. I’m a bit confused by this article — I am a type 1 who migrated to Type 1 after 10 years as a Type 2. Using a close relative as an example, she thinks that Type 2 diabetes is purely a function of lifestyle choices which I made (overweight, sedentary, etc.) while Type 1 is caused by externalities — a virus kills the isle of pancreas and voila, due to no fault of your own, you now have diabetes. When you are stricken with Type 1 diabetes, the book you read is “When bad things happen to good people.” When you have Type 2, you read some variation of “The Seven Habits of Highly Healthy People” (if Mr. Covey will pardon the paraphrase). Type 1 is based on bad luck; Type 2 is based on guilt. Type 1: people feel sorry for you; Type 2 — people look at you as being a looser.

    At some point, I guess, we all have to move past these perceptions — we got what we’ve got, no matter how we came by it. Not everyone who got throat cancer smoked; not everyone who smoked got throat cancer. In a diverse genetic world, correlation does not necessarily lead to causation. The blame game is without winner.

    Posted by Tom Holley |
  4. I know there are a lot of people with misconceptions about diabetes. I run into them all the time. Mostly the misconceptions are about all the things that we are not to eat. I am very open about having Type 1 and will test my blood anywhere and everywhere if need be. When people find out that I have diabetes they almost always assume that it is Type 2, what their Mom, Dad, Aunt, or Uncle had. I look at these time as an opportunity to educate people about the differences. In fact, even the question “Should you be eating that?” is an opportunity to update people about the advances in diabetes care.

    Posted by Gary Taylor |
  5. I have elevated blood sugar levels, but have managed to keep my A1C below 6 for 1-1/2 years without meds. So I do have an understanding of this condition. It seems to consume me most of the time. I’m always thinking about it. When I was first told by a doctor that I indeed had diabetes (I’m not overweight, no family history, etc.), I was, and still am, angry, depressed and dumbfounded. How did this happen to me? Anyway, I’ve always wondered, referring to Mr. Lagergren’s comment, why people test and then give themselves an insulin injection while sitting at a table in a restaurant. Why not just go to the restroom and eliminate curiosity from others around you? Especially if it bothers you that people look.

    Posted by Janet |
  6. What the heck….I keep my pump in my bra. Nobody seems to be watching when I retrieve the pump to check my sugar and bolus for carbs. If anyone is so selfconscious about this, then go to the restroom to bolus. I do not feel any different as a diabetic than when I was not a diabetic. I am still me. We all do what we need to do. Fact of life.

    Posted by granny Pat |
  7. Oh, hello there. Talk about stigma… I am a type 2 diabetic. No, I am not over weight (bmi 17) nor have I lead a life of sin and indulgence. When I mention (if it has to be said) that I am diabetic 2, the reaction is “You can’t be; you’re not obese, blah, blah, blah”. Even my doctor issues a disclaimer when he makes comments about diabetes patients (…but not you…)

    So now I am hearing that Type 1 PWDS want to be sure that others know that they are NOT TYPE TWO. God forbid that anyone should judge their life style choices…

    I would never criticize a type one diabetic - your path is a difficult one. However, some of us type 2 folks simply have bad genes even though we do “everything right” . Please be a little more empathetic with type 2 folks - while they may have brought their problems upon themselves, perhaps they are genetically unlucky. Then they have to deal with social stigma (pigs that we are…) and finding a path when all the usual things (lose weight, eat right, exercise) are already part of our lives and aren’t the magic cure that is implied.

    Maybe I will simply say I am a type one…. Then I wouldn’t have to explain that not all of the other ones are necessarily obese, slobs, and pigs.

    Posted by micha |
  8. My sister, the Ph.D is uncomfortable w/ me doing a glucometer check @ the table in restaurant. Since it involves blood, it should be done in the bathroom so that the blood doesn;t contaminate anyone. She has the same reasction some other people have of AIDS and blood spills or pricks w/ needles.
    I suppose anyone who handles blood a lot must have the same fears? Anyone out there, please educate me on the perils of blood contamination other than AIDS. I have a superficial working knowledge of that disease.

    Mostly, I get irritated w/ outdated info about dibetes, T1 or T2. What you can’t or can have. The “can’t” outweigh the “cans”.
    Most don’t believe I have T1. I look “too healthy” to have “diabetes”. One stranger thought that Diabetes is 1 disease, no T1,T2, LADA, gestational or otherwise. I snowed him w/ the variations that have come to light.

    My friends & volunteer co-workers at the fellowship I attends know & I’ve become a resource to educate anyone who has a concern or needs info.

    “I thought T1’s were skinny” - extremely irritating. That’s changing too.
    Thank you for letting me vent a little.A relief!!

    Posted by shinaye |
  9. I started as T2 17 years ago and along the way migrated to a T1. I test whenever and where ever. Mine is hereditary. I had gestational for both children and held diabetes at bay for many years until I went through a few months of exceptional stress and crossed the line. When people ask questions or make remarks, I look at it as as opportunity to educate out the misinformation. I really fault the media for the vast amount of misinformation out there. Because the focus is on childhood obesity with the connection of T2 from the media constantly, no one knows there are other reasons to develpoe diabetes. To paraphrase Shakespeare, “First, kill all the journalists who don’t do their research…..” It can get very frustrating at times.

    Posted by Eliz Ferguson |

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