Living with the stigma of diabetes

One good thing that comes from being super open about illness - people are super open with me about their illnesses. We form a secret gang. There are negatives about disclosing, but there are also positives. People ask me questions. I ask them questions. We stick up for one another. We learn how people from a variety of illnesses have shared experience. We learn what is unique to each of us. We have a sort of secret church, to which we all belong.

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We challenge one another to be better. There are so, so many of us, especially if we only slightly expand our definition of what it means to be ‘sick.’ I love the sick. They are really the best among us - that’s where you find the truly gifted, the resilient, the unstoppable, the firestarters, the undefeated.

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I think stigma is the proper term, since it is perfectly consistent with the concept of stigma that it be imposed by other people, whether accurately or inaccurately.

The problem with the theory that you should try to educate people about your disease is that others assume that anything positive you may say about it is just some fabrication or lame rationalization to make your situation seem less hopeless than they ‘know’ it to be, so they look at you with pity and contempt while you’re explaining.

But after 52 years of the disease I accept that it is stigmatizing, since it makes some employers not hire you (but they’ll never admit why, so that they don’t get a discrimination suit), it causes many people to shun you, it burdens you with a condition that makes you behave, on occasion, involuntarily like a drunk or a drug addict, both of which conditions are shameful, and for most people, appearance is the reality. People are reluctant to marry you, because they assume they will be burdened with your premature death, with constantly having to care for hypoglycemic emergencies, with the disabilities of diabetes, from dialysis to blindness, or, if you are male, with impotence. So you have to face it, as a diabetic you will be shunned by many people.

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Maybe others feel stigmatized but I don’t

Let me clarify my comment. I meant it in regards to adults. Now, its been 30-40 years since Ive been a kid living with diabetes, and although I dont remember it being stigmatized, I do remember dealing with misconceptions about T1D. I dont remember it being aggravating though. But then, I dont remember what I had for breakfast this morning either LOL. I can see in today’s electroinic age it could be an issue for kids and teens.

Ive also lived with a need to know basis for my T1D. I dont go out of my way to hide it, but I dont shout it from the rooftops either. Not once have I ever said I cant do that or eat that because I have diabetes. I just decline. Every job Ive had I always sit down with my supervisors/managers and explained how T1D could impact my job, and usually say it in a snarky way like “if you see me passed out at my desk, you night wanna call 911” LOL. I absolutely refuse to let my T1D run my life. I manage it, not the other way around.

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As with all things, it does have to do with our natural dispositions and our circumstance, so I would definitely say it is not self-induced.

As to natural dispositions, some of us are naturally more self-contained, unconcerned or stronger in regards to others’ opinions. Certainly, there is some element where one could say one should be tougher, but for some people, this is not possible, and the attitude that one is the cause of one’s bad feelings is insensitive, as well as not adequately aware.

As to our circumstances, I, as a young adult with a few, but not a large group of, friends was not subject to the many differing opinions as to the causes and circumstances of my diabetes. As with any distribution of people, there are always going to be extremes, both positive and negative. This is likely more common in adolescents and children, both of which would likely suffer the indignities of others’ ignorance and at times others’ bullying.

Even hot tubs try and tell us what to do.
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https://healthguides.healthgrades.com/take-charge-of-your-diabetes-treatment/what-people-with-diabetes-should-know-about-hot-tubs

I think it’s just a disclaimer. I think the point that “heat can increase the rate at which your body absorbs insulin” is very valid. For people who are unaware of these things, there is some potential danger. The hot tub owners are just ensuring that they don’t get sued later.

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That’s not hot tubs telling you anything, but rather s common medical knowledge and common sense. Lack of feeling can mask hot water tissue damage as well as hot water immersion causing circulatory (including heart problems) issues. Beware of hot tubs unless you know how your body can handle it and make sure it’s not TOO hot. While you personally might be able to be fine sitting in a hot tub for an extended time, others are not able to. And don’t even think about what can happen to someone with compromised circulation should they fall asleep in one.

I’m just joking. But, in all seriousness, hot tubs shouldn’t be so bossy. All they do is nag, nag, nag.
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I have to disagree. I was informed by a caring colleague that she overheard a department mgr at my work saying to an upper level mgrt that I SHOULD NEVER BE CONSIDERED FOR PROMOTION BECAUSE I WAS UNRELIABLE. This person went on to explain that I was unreliable because I had diabetes, and we a;ll know that diabetes is self-induced. If I wasn;t reliable to take care of my health, I was obviously not reliable enough for promotion. The fact that I have T1 D was well-known. We have a lot of work to do regarding the general public and understanding of D.

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It’s actually a self-defensive reaction, isn’t it. Easier to deal with if it’s something people do to themselves, that way they can tell themselves it won’t happen to them. Otherwise, it’s something that could happen to anyone–much scarier. And guess what–it could.

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My thought exactly.

For the workplace diabetes-makes-you-unreliable attitude, keep in mind that the Americans with Disabilities Act includes diabetes as a disability. Check it out on the American Diabetes Association web-site. They have a whole section on workplace issues relating to diabetes. It is ILLEGAL to not hire/promote someone simply because they are diabetic, unless the job is one of a very few where reasonable accomadation isn’t reasonable, or puts others in danger.

It’s hard to prove that was the reason you didn’t receive a promotion though. It can even be hard to prove you were fired for that reason. All the company would need to justify firing you is an instance, unrelated to Diabetes, where you messed up on the job. None of us are perfect. We all mess up sometimes. A small mistake could be a legitimate reason to let someone go, or it could be a good excuse.

I think discrimination in the workplace is a valid concern. People may experience it in certain professions more than others.

One of the reasons I keep my diabetes a secret from everyone in my social context is that I work in academia, where hiring and promotion decisions are far too subtle ever to test by clear and objective criteria. So if someone wants to discriminate against you in employment decisions because of your diabetes, you will never be able to prove that that was their motivation.

When I was an undergraduate I was recommended by my university for a foreign study fellowship, and every student in the past who had received that endorsement was approved by the grant giving agency for the fellowship. They insisted, however, on a medical test for everyone before the fellowship would be confirmed, and on the basis of a single hyperglycemic urine sugar test (that was all we had back in those days) they rejected me as medically unfit for the fellowship. Of course, a single blood sugar test says nothing about the fitness of a candidate for anything, and a single urine sugar test says even less, and even if a person of 21 had a high blood sugar value, he is not likely to be unable to perform academic work, but there you have it. I couldn’t even apply the Americans with Disabilities Act against the decision, since it was a foreign institution which had denied the fellowship.

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Of course what you were actually running into there was the stigma around T2, not T1, backed by complete ignorance that adults can have T1–even the ones who got it when they were toddlers. I’ve run into the I thought only kids have that kind! response numerous times.

But to me the bigger point is that it illustrates how much, much bigger a stigma there is for people with T2–to the point where I have some discomfort even talking about “stigma” as a T1 because the disparity is so great. It also raises the vexed issue of how those of us on the T1 side deal with it. My first impulse is to vehemently point out that those prejudices don’t apply to me, which in a fluid social situation can be very hard to do without reinforcing the idea that they do apply to people with T2. Even harder in a case like yours, had you been in a position to respond, where there’s much more at stake than just a social interaction.

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I agree that the stigma issue is much worse for T2’s - all of the prime time ads for T2 meds show overweight people, the lack of knowledge that the main risk factor is heredity - which is why youngsters are being Dx’d with T2 with the addition of poor nutrition, etc. PWD’s are lumped together as a group - no matter the type, and thus all diabetes is self-inflicted (though none truly is - well maybe gestational - after all they did get pregnant! - tongue in cheek here). Complicating the issue is that the general public believes that if PWD’s stop with the candy and get off the couch they’d be cured.

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@Seydlitz, I have found it very difficult to deal with foreigners on this topic. The cultural disconnect between different country’s understandings of medical conditions is just too large to overcome. That’s a real bummer.

I go back and forth - sometimes I feel like people think that I am “Just like everybody else,” and that sort of perspective can be difficult because people will prioritize any/every little thing over important things (like eating) that allow me to survive.

On the other end of the spectrum, some people really fixate on the diabetes thing and seem to obsess about it. They may make effort to restrict me from normal activities.

Both of these are bad. The best thing is when people allow me my own agency to make decisions regarding when I eat, sleep, exercise, or go to the bathroom. I do not allow infringement on decisions regarding normal bodily functions because even a toddler gets to make those decisions for him/herself. We teach toddlers that they are in charge of their own bodies. Diabetics deserve the same allowances. People who infringe have bad boundaries, like Rick James. There’s a social responsibility to respond to that level of disrespect. If you don’t enforce boundaries immediately, it only gets worse…and habitual.

Although there is a special kind of stigma directed against type 2 patients based on the assumption that they brought their disease on themselves, given that most people don’t know the difference between type 1 and type 2, that doesn’t help relieve type 1 patients of the stigma of the disease. Also, since type 1 is sometimes distinguished from type 2 by being characterized as ‘severe’ diabetes, I’m not sure I feel very de-stigmatized by belonging in the severe category of some problem.