Diabetes Self-Management Blog

Do people ever treat you as if diabetes makes you a second-class citizen, or makes you damaged goods? Do people blame you for diabetes? Such prejudice is sometimes called “healthism,” referring to the belief that healthier people are superior to people who are less well.

As many commenters posted in the “Type 1 vs. Type 2″ discussion, the public is often told that Type 2 is the fault of those who have it. They’re doing it to themselves. Readers with Type 1 expressed anger, because they often get painted with that same brush.

That kind of blame is totally unwarranted, of course. Both Type 1 and Type 2 are environmental illnesses with strong genetic factors. But even when they’re not blaming, people can still find ways to put you down for being sick.

I see this nearly every day from my wheelchair. People are anxious to help. But they tend to treat me like a child, as if I don’t have the ability to take care of myself, or I don’t have anything worth saying. One day recently, I was out in the neighborhood with my wife, and a neighbor smiled at her and said, “Oh, good. You’re getting him out.” I felt like slapping her, but somehow I held back.

It’s a little different with diabetes, because it doesn’t show as much. But don’t people tell you what to eat, or that you need to exercise more? Or give you some “valuable” information they heard on TV, like you’ve never learned anything about diabetes before?

Healthism is always annoying, but it can be damaging if employers, landlords, or government officials believe it. People are refused leases, drivers’ licenses, and jobs based on health prejudice every day, and it can be very hard to redress.

Health-care providers sometimes have the worst healthism. They act as if we’re sick because we don’t follow their orders, rather than seeing the environmental, social, and genetic burdens we’re carrying. They label us with names like “noncompliant,” “in denial,” or “nonadherent.”

We can even be healthist towards ourselves. A reader named Joan wrote me that she was afraid to pursue a love relationship because she didn’t want to be a burden to a potential partner. She was judging herself before other people got a chance to judge her. I see this all the time in the multiple sclerosis (MS) community. People hide themselves away because of illness, while other people who could love them are left lonely.

I know when I have a bad health day, I always think it must be my fault. If my MS seems to be progressing, like if I’m having more trouble walking, I think it must be something I did. Am I eating the wrong things? Am I stressing too much? Am I keeping myself too cold or too warm, or too something? I can keep myself up nights worrying about whether a new writing project will be good or bad for my health, or asking myself some other question I can’t answer.

Likewise, when people’s blood glucose is up, or when they have a new diabetes complication, they’re likely to blame themselves. Of course, many times what you eat can cause high numbers. But there are many other causes, and not all of them are easily traced. A blood glucose number is not a value judgment. It says absolutely nothing about how good a person you are.

It makes sense for you and me to try and figure out what we can do better. But we should also accept that we are doing the best we can. We are good people making, for the most part, good decisions in tough situations.

It’s worth trying to live a healthy life. Feeling powerless is the most stressful feeling there is, so in general, so it makes sense to do things that help us feel in control. But we have to acknowledge that we don’t have total control. We have to accept ourselves as we are, at whatever level of health.

Maybe we should treat health as more of a gift, and less of a responsibility. Maybe the person living the best life is not necessarily the one with the lowest A1C. Agreed?

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Comments
  1. Well said!

    Posted by Caro P. |
  2. The day other people start paying my mortgage is the day I’ll give a damn what they think.

    “Health-care providers sometimes have the worst healthism.” That’s when you fire that doctor and get another. If they’re not working out for you, fire them and so on. I will NEVER take BS from someone who works for me. I don’t understand why anyone would put up with that from a doctor or health care provider. Move on. Doctors are a dime a dozen. The phone book’s full of them.

    I don’t discuss my health with others. It’s none of their business. The whole point is, those that mind don’t matter and those that matter don’t mind.

    I am not a number and refuse to be ruled by it or by idiot “well meaning” outsiders. Why would anyone do that? My life is hard and I WILL NOT let anyone make it any harder. Period.

    Posted by Tia |
  3. Thank so much for sharing your story. I know exactly how you feel. I took care of my mother who was in a wheelchair since I was 7, due to a stroke. Her speech was impaired but she was sharp as ever. People who didn’t know her used to treat her as retarded and I had to continously stop myself from slapping at those people or yelling at them. I now have Diabetes and occasionally run into someone ignorant who treats me similarly.
    My heart and thoughts are with you.

    warm regards,
    Esther

    Posted by Esther |
  4. Interesting article, but not to start a war, isn’t Type 1 an autoimmune disease as well as having environmental and genetic components?

    Posted by kim |
  5. Here is one of my many stories about self-stigma, and of beginning to learn that I don’t need to do that to myself:

    About 20 years ago, I diagnosed my own diabetes. (Eventually, I did tell my doctor too.) During the years surrounding that time, I was struggling to survive major depression with panic attacks.

    Not too long after I figured out that I had diabetes, I told my husband that it was OK with me if he left me, since I did not think he should have to live with someone who had both chronic mental illness and chronic physical illness. He said, “Why would I leave you now when you need me the most? I love you, and when I promised to stay with you in sickness and in health, I meant it.” I told him that I thought it must be really hard for him to live with me while I was having all the severe problems and uncertainty, especially the mental health issues. He answered, “Yes, it is hard. But everyone’s marriage is hard work at times. Other people have other hard things they face, and this is what we must face.”

    Posted by Beth |
  6. Beth, you sure have a keeper there!

    Posted by Gwen |
  7. Well-said, David. There’s an excerpt from my book, Health at Every Size, available for free download (http://lindabacon.org/HAESbook/pdf_files/HAES_Message%20for%20People%20with%20Disease.pdf); it’s intended to help support people coping with disease and self-blame. You may want to check it out - it adds support to the beautiful message you write here.

    Posted by Linda Bacon |
  8. What a beautiful post! It should be required reading when people enter, and again when they leave, training for medical professions!!!

    Posted by Marilyn Wann |
  9. I am both a nurse and a type 1 diabetic of 42yrs. I can tell you that when I am trying to help a diabetic pt to improve their control, I am only thinking of the complications ahead if the control isn’t in a better range.
    We should never expect perfection.
    We should all enjoy our lives, and many times we don’t know how badly we feel, until we get better!
    I have been on both ends and I can tell you neither one is easy. But when one of my pts comes out of the hospital at 45 yo with retinopathy, dialysis and two heart stents….it both scares me and breaks my heart.

    Posted by Carolyn |
  10. Having Type 1 diabetes for over 30 years, I have never shied away from sharing my disease with others. When I was diagnosed at age 9 my teacher asked me to share with the class what I had to do to check my urine sugar and how I learned to give shots to an orange in the hospital. That was a great experience and was something I think helped me throughout my life as a diabetic.

    Lately though, diabetes is in the news quite regularly and a lot more people are generally aware of it for that reason. For example, I was taking a shot at lunch and explained that I was diabetic and the person across from me said, “Yeah, everyone’s diabetic now a days…” to which I replied, “I’m old school, I’ve had it since I was 9.” That got him to realize that I was not someone who didn’t take care of myself and became diabetic (not that all type 2s are that way) but I will say, everyone trying to offer input or share information they’ve heard are all well intentioned. Even when the nurses call from my insurance, they say that I seem to have it all under control but always try to offer advice. Sometimes I listen and other times I realize that it won’t work for me for whatever reason and again, it is just well intentioned or part of their job requirement to cover these things.

    I have always taken it as that. Often times I can respond with a thanks or that works for people with Type 2 diabetes. Don’t let others stigmatize you because of your illness. Take control of it yourself and share with others your successes. Stay positive about what you’re doing and never be afraid to ask your doctor or share your experience with others.

    Posted by Mike |
  11. Absolutely loved your article! I have a different probem and it is havingdiet drinks or water available at social functions. My husband and I have to attend a lot of dinners, pot lucks, buffets, etc. and most of the time they have only cocktails, and then coffee, punch and sugar loaded soda. When I ask for water, they look at me like I have three heads and sigh. This is the hardest thing for me to handle and I have started taking a bottle of water in my purse because I have sat through entire meals with nothing to drink because they didn’t think to have something with no sugar in it.

    Posted by Linda Lewis |
  12. David, thank you for a thought provoking article. I have been Type 2 for 12 years and there have been moments when I have beaten myself up because of it. I once had a boss who treated me as a total moron because I am diabetic. She has a grown step daughter who is diabetic so she knows all about it! I finally left that job because of how she acted toward me. In the first years after being diagnosed, I would tell people I worked with that I am diabetic so they would know what to do in case of a low sugar incident. Now I just deal with it myself because some people are unable to handle being around us. It works anyway and probably is for the better. Too bad.

    Posted by Cathy A, |
  13. Just to let you know that I absolutely agree with you and love your post! Thanks for putting in black and white what we “people with a chronic condition” feel sometimes.

    Posted by Ivannia |
  14. Thank you for that article, it helped me.

    Posted by christy |
  15. Thank you for your article. I am a rehab nurse and work with newly diagnosed diabetics and those who’ve had it for years. Some have managed it well and some have not. Those who have not eventually end up in my area because they had a foot or leg amputated, organ transplant or renal failure etc.

    We have to “re-educate them” and some have the attitude that “they don’t care and don’t want to learn” carb counts or sliding scale or even the importance of checking their glucose before meals and at bedtime.

    Some are lucky and have family members who will manage their sugars and meds. Others are not so lucky and I fear the worst for the

    For the newly diagnosed diabetics, we have them see a diabetic educator and give them lots of tools to help them. We have them manage their BG and insulins before discharge and do not treat them like children. We empower them with the skills and resources to be independent when they go home.

    Posted by Kris |
  16. I had a 32 yr old gf who had Type 2. She is someone I would label “noncompliant.” Sorry to use that term, but she would go out drinking and one time passed out cold. Her friend, a nurse, gave her insulin WITHOUT checking her blood sugar. Guess what, girl needed glucose. The girl gave herself insulin but the nursefriend did not know that! She called 911 and they got her the care she needed.

    Well, eventually, she went home from work feeling sick. No one heard from her for 2 days and could not get a hold of her. A friend called the landlord to request to check on her. He found her — DEAD. Her blood sugar had sky rocketed so high, they believe she went into a diabetic coma and died.

    Her best friend would express her concerns to me about her because she saw how she drank a lot and then had these strange smelling breath at times. I told my friend to try to support her and to call 911 if she ever felt her friend was in danger.

    Sadly, there are those that live with it and are willing to take the risks while we stand by and worry for our loved ones.

    Posted by Kris |
  17. When I was first diagnosed with Type II Diabetes about 6 years ago I wasn’t ashamed. It runs in my family and it was probably inevitable that it would eventually catch up with me.

    I freely discussed it with others and in fact became active in a support group. However, over the years I’ve learned to not discuss it with others (although I’ve managed my diabetes fairly successfully with oral medication up to this point) because I don’t want people judging me about what I eat or how often I exercise, or any other number of topics related to MY diabetes that others felt free to poke their noses into.

    I didn’t think I’d become a “silent” diabetic but that is exactly what happened.

    Posted by Linda |
  18. I know where you’re coming from. I sometimes blame myself for elevated blood sugars altho I follow a healthy, balanced diet and am over weight by only about 10 lbs. I’ve had type 2 diabetes for three years, and the first 2 years did very well keeping my A1c below 6. Then, out of the blue, about 6 months ago, my fasting blood sugars were often out of control even tho I was following the same meal plan and exercising 6 days a week. My A1c went up to 7.1 so I was put on a second oral drug. Fasting levels are still on the high side, altho not as high as before, but it’s very frustrating to be doing everything right and still not getting the relults you expect. Now I look at insulin as being in the near future for me, instead of way down the road like I thought. I’ve decided not to beat myself up over this, but to continue to do the best I can.

    Pam

    Posted by Pam S. |
  19. I have never been embarrassed or apologized for having Diabetes…I was diagnosed with type 2 back in 1985 I was 36 yrs old and I was in denial for 10 yrs.I could kick my self for not listening and doing what I had to do so that I wouldn’t have to be taking insulin shots twice a day now…I work very hard at trying to keep my numbers in control I have some good days and bad days..I will eat anything I want I just do it in moderation..But I don’t ever beat myself up for having diabetes…It is what it is..I deal with it…I would rather be in a room full of diabetics than in a room full of heroin addicts etc…I don’t let anyone get me down and I don’t allow my self to get stressed out….I take any problems by the horns and deal with them one at a time…

    Posted by Linda |
  20. Another great post David! I have had diabetes for 42 yrs and never not talk about it. I think the only way to educate people is for us diabetics to tell others how it affects us, how it isn’t easy and to dispel the myths about diabetes. I prefer to teach someone if they do not know the facts. It is always better to give than recieve..this includes information.

    Posted by CAthy |
  21. In a couple of months (Feb./11) I will “celebrate” 10 years of type 2. Not a medication for it, yet! Diet and Exercise {PLUS: the most loving, thoughtful wife — 59 years for us!!!) - have made it possible. I freely discuss Diabetes when appropriate; but do not make it my first note in any “organ-recital”. When you’re 82, you have lots of notes for “organ-recitals” for sure. I do tell people, “I have all the ice-cream I need.” Very careful about “Carb Labels” - and test twice a day. Thank God for all the help we get from so many sources these days.

    Posted by Paul |
  22. I would like any help that you can offer. I am having lots of difficulty with after meal spike.

    I take 1 to 4 units of fast acting insulin,(Humalog), according to my glucose level reading, either 15 minutes before meals, or as I begin eating. It takes about 4 hours for my gluose level reading to return to a normal. My highs may go up to as much as 240, or more sometimes.

    I am on a beta blocker due to a heart problem. I have had bypass surgery in the past. Could the beta blocker possibly be a cause of slow return to normal readings.

    Posted by Mildred McNair |
  23. Hi Mildred,

    Your beta blockers could be involved in the high after-meal sugars, but the only way to tell would be to change medicines and see. First, what are you eating at these meals?

    David Spero, RN

    Posted by David Spero RN |
  24. Bang on messagea and content.

    As in life - always tons of blame to share around.

    If anything I was guilty of was not spending time early on learning everything I could about diet treatment, exercise and supplements and further digging out what was happening in my body. My liver is my friend and enemy and reduce insulin release - both basil and meal boluses resulted in my liver stuffing me up. How did I know.

    I spoke to many medical folks early on to find out what was doing the am disaster. ANswers I got were to be charitable - less than useful. I have this new test for any medical person who I proposing using.

    At reqest of a kidney doctor, a most reasonable request, I should get an expert - an endoctrinologist. The first wanted to juggle my meds and remove starlix and put me on the get ready set eat 10.5 hour glyburide pill. I was trying to lose weight not add it. The second when I fond him afer driving 40 miles , and after I told him my previous A1c nmber began screaming atg me. I finally said look at my lastest numbers and after sputtering agreed that is better. Didn’t go back there.

    Your article hits at the heart and sole of the bias and stupidity. Making things worse is the time, detail and working required to solve the diabetes issues which flys in the face of the Eureka - I got an instant fix and processing patients at 30 a day at 10 minutes each.

    Posted by jim snell |

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