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Is there a Stigma attached to your diabetes ? What is your experience.

Discussion in 'Diabetes Discussions' started by Langerhans Failed 1993, Oct 11, 2017.

  1. Langerhans Failed 1993

    Langerhans Failed 1993 Type 1 · Member

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    I know for myself, the biggest physiological impact of Diabetes stigma is that I don't like to test or inject in public because I don't like it when people look and I wonder what they think. I have delayed testing and injecting, particularly in restaurants, because of this. What are your experiences and feelings on this, or other diabetes stigma related experiences?
     
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  2. helensaramay

    helensaramay Type 1 · Expert

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    When I was first diagnosed, I was concerned about people looking at me when I was injecting.
    I soon realised there was a difference between injecting in public and injecting publicly. If I didn't make a fuss about it, no one noticed I was injecting.
    I used to inject when at my desk at work. My colleague, who sat next to me, didn't realise for over a year that I had diabetes: he never noticed because I was not injecting publicly.

    Over the years, I have got used to it and don't care as much. I still not inject publicly but if someone has a problem with me injecting to keep myself alive and avoid complications, that is their problem not mine.

    That is not to say I tell everyone about diabetes. I am still conscious when I take a BG reading and wouldn't do it in front of people I don't know very well such as customers in a meeting. I would rather go without the biscuits than risk the chance of hearing "what are you doing?", "I am surprised someone as thin as you has diabetes" or "would you mind doing that somewhere else?"

    I have never heard the last point and I don't look forward to the awkward standoff when I do.
    But I have no stigma that my body decided to kill off a bit of itself due to no fault of my own.
     
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    #2 helensaramay, Oct 11, 2017 at 12:11 PM
    Last edited: Oct 11, 2017
  3. Diabeticliberty

    Diabeticliberty · Guest

    I am diabetic and have been for a long time. I will be diabetic for the rest of my life. In this respect it is part of what I am. I will test and inject in private and in public. I do not wear this as some kind of badge of honour but by the same token I see no shame in it. I have tested and injected in pretty much every private arena and I do mean EVERY private arena. I have also tested and injected in every public arena that I have found myself in. These have included restaurants, trains and aeroplanes. Most people don't notice and the ones that do notice don't seem to care all that much. I once got asked by a police officer why I had a couple of syringes in my car? As she had stopped me for a speeding offence. She really didn't seem too intent on waiting for an answer. She just gave me my wonderful 3 points and fine and merrily went on her way. Bless her heart :)
     
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  4. JohnEGreen

    JohnEGreen Other · Expert

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    Well I don't inject so I cannot answer to that but I have tested my blood when out and about if I felt I needed to and no one has remarked on it so far.
     
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  5. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Guru

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    I don't inject at all, but I have tested my levels in public. No one has commented. (even though the meter volume is high enough for all the bleeps to be audible) I am a Type 2 diabetic, and I am proud to be so. This is because I took the bull by the horns very early on, realised it was the kick in the bum I needed to get myself sorted out, got on with it, gained excellent control, lost all my excess weight, improved my general health, and now, nearly 4 years down the line, am still in a good place. I am proud of myself and don't care who knows about my condition. I tell anyone that needs to know, including the restaurant staff that covered my salad in a sugary sweet dressing without mentioning this on the menu! I have never seen any shame in it, and never regarded it as a stigma.
     
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  6. ExtremelyW0rried

    ExtremelyW0rried Type 1 · Well-Known Member

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    Yes there is a stigma and I've been told lots of times that being diabetic is my own fault for eating too many sweets when I was little. Even though I was diagnosed aged 11 and my bmi is 19 so I hardly look like I eat a lot of sweets.
    It annoys me.

    I also feel that if I were to develop any complications I would be judged for not doing a good enough job.
    Basically having diabetes is one long judgement. Each number is a reflection on you it seems and clinic have the opinion that if it isn't how it should be you are doing something wrong.
     
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  7. ickihun

    ickihun Type 2 · Master

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    My mum and sisters are naive to how diabetes can affect me so yes ignorance even without a stigna can be detrimental. I've heard them say such untrue rubbish about my diabetes. If they asked I'd tell them the true facts. They just talk or laugh over my serious health condition. It must be nice not being diabetic and eating rubbish without a care! I watch everything I eat.
    Now I'm losing stone after stone they are starting to wonder if it's because I'm ill with the sugar. Er no. Having good control with longterm metformin and enough insulin. Ignorance must be bliss!
     
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  8. sally and james

    sally and james Family member · Well-Known Member

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    Some 35 years ago I was a regular commuter on a fairly long distance train to London. There were actually quite a group of us who had got to know each other and there was often a bit of a party atmosphere. Strangers coming into "our" carriage were generally made welcome. One evening there was a young woman of my own age, so I offered her some sweets, she declined saying she couldn't eat sugar, so, feeling generous, I offered some fruit, again declined. I was told, a bit sniffily, that fruit contained sugar - end of conversation. If there had been an internet in the 1980's I expect she would have gone home and had a moan about me.
    I don't know why I remembered the incident, but when my husband got his diagnosis, four years ago, it came back to me. Eat five a day, definitely not, FRUIT CONTAINS SUGAR. And so began our low carb journey.
    The point I am trying to make, should you still be with me, is that people may be a pain in the bum, but you never know when you might actually be helping or educating someone.
    Sally
     
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  9. Lampman

    Lampman Type 2 · Well-Known Member

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    I don't inject, so I can only comment on public testing and possibly leaving or refusing some foods when out. One of the few good things about getting older is I really don't give a monkeys what others think of me. Equally I do not try to upset others, and I do try to be discrete where necessary. I have seen others inject and it is interesting to watch the reaction from a few people. We do hear stories of some people going over the top in their reactions, and happily I have not seen that. Indeed, I discovered someone I knew, though not well, to be type 1 that way. We did have a moments conversation about it, I find it interesting how people react to finding out I am type 2 by my refusing sweets, cakes etc. I only had one experience (so far) of that moment when I had left something untouched in a restaurant, and it caused one of those "was there something wrong with your meal sir?" comments from a rather young waitress. I explained and she was obviously relieved, and explained they had to advertise ingredients for allergy sufferers but could not predict every condition that may be influenced by their food. We both laughed when I said thats ok, I look out for me. The serious point is that you should not do or fail to do something which will result in a negative impact on your health for fear of giving momentary distraction or offence to someone else.
     
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  10. himtoo

    himtoo Type 1 · Well-Known Member
    Retired Moderator

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    2 answers to this very important question

    1-- in my early days of diagnosis ( 1972) I was very ashamed and almost always injected in a toilet if I was out and about -- when blood testing came about for me ( early 1990's ) it was the same -- very ashamed and did not want to be seen

    2- in the last 15 years or so - I have become older ( obviously ) and more strong in belief that it was never my fault -- that my diabetes is not something to be ashamed of -- so these days I test in public , and run my pump in public
    I also had injected in public for the last 14 years or so
    none of us asked to have this so we should not hide it away.

    I just wish I had been stronger when I was younger ,,,,,, but times were not the same as they are now......I would just say to anyone reading this ----------- be strong !!!!!!!!

    xxx
     
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  11. catapillar

    catapillar Type 1 · Well-Known Member

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    Ive never felt ashamed of having diabetes.

    I'm not under a the illusion that anyone would be paying be enough attention to notice me testing or injecting. I don't do a little song & dance number before I test, I just test, it really isn't anything noticable. I don't spend my time at restaurants staring at other peoples laps so I would think if anyone else does there is more questionable about that than any injection I'm doing that the only way they would notice is if they were doing some pretty determined under the table staring.

    I'm fully aware type 1 is an autoimmune disease. If anyone else is under the impression I got it from eating too many sweets their ignorance is their problem. It doesn't have any impact on me. Only one person has ever made a too many weeks type comment to me, I laughed explained it's an autoimmune disease and he looked fairly embarrassed to be honest because I was pretty clearly laughing at him. It didn't an annoy me, it just lessened my opinion of the person who made the comment, obviously I don't care what his opinion of me is because he is someone who thinks its ok to make blame comments about a chronic health condition he obviously knows nothing about so his opinion is worthless to me.
     
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  12. MikeTurin

    MikeTurin Type 2 · Well-Known Member

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    @catapillar I have type two and there was a period of my life where I gained rapidly weight and found that I had T2 only because I am a blood donor, so I got a FBG test that was out of control.
    The problem is that a lot of people are saying that I got diabetes because I was fat and was eating a lot. The sat thing is from what I have read in forum is that event T1 are thinking that being fat makes you a T2 diabetic, when there is reaserch that have found that people with T1 and T2 have a common genetic base https://www.ncbi.nlm.nih.gov/pubmed/16306339
     
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  13. Langerhans Failed 1993

    Langerhans Failed 1993 Type 1 · Member

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    Hi
    I can relate to all you have said, I am studying Health Psychology, specialising after a lot of years as a regular Psych student. I hope to do a research study in the stigma those with diabetes experience and you have highlighted a number of these. You and I are not alone in this. When I mentioned diabetese stigma to some of my friends they were oblivious to it as they didn't think there was a stigma attached, probably because they are unaware of what we live with. Stigma is a perseption of the perceiver and therefore it can be something that is totally oblivious to those not living with it. Infact even in other areas of life where there is stigma, those not experiencing it are totally unaware of the impact. Thank you sooooo much for your response.
     
  14. Langerhans Failed 1993

    Langerhans Failed 1993 Type 1 · Member

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    Hi
    My mom still cant bear seeing me inject, she refuses to let me inject in the same room as her, I think it may be because she feels in some way responsible and can't deal with it. I have learned to be resilient over the years. My husband and 6 year old are both very supportive and my 6 year old even knows exactly how to treat my hypo and call for help if he and I are caught alone in a situation like that. I feel a new research project looming on understanding/lack of understanding of family/friends. Hmmm something to think on.
     
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  15. Langerhans Failed 1993

    Langerhans Failed 1993 Type 1 · Member

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    Goodness whatg a way to find out!! Yes i think there is a lot of misconseption about diabetes causes and also about Type1/Type2 differences and management.
     
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  16. bobhurley57

    bobhurley57 Type 1 · Newbie

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    I have had Type 1 since 1991, with both my sisters also type 1. When I was diagnosed I adopted the approach that “My diabetes had to live with me and not me with it.” So have always tested and injected wherever and whenever necessary. I became the VP of a major telecom company and would test at meetings, with Customers present the whole range. Never had any problems. I also think as a 60 year old that has had Diabetes for 26 years it is up to me and other like minded Type 1’s to fly the flag for all the youngsters just coming to terms with becoming a Diabetic. They see you testing and injecting in public, they come and talk to you about their diabetes and the pressures they are under. Lead the way set good examples that is my philosophy
     
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  17. Bic

    Bic Type 1 · Well-Known Member

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    I read somewhere – probably it was a USA site called DiaTribe – that T1s actually tend to feel more stigma because their treatment is more visible and likely to attract a lot of undesired attention. I quite agree with such a view. I would be glad to test and inject in public but I am often asked not to by family and friends, who think it is unproper and would feel ashamed for my 'lack of manners'. Anyway, it IS sometimes rather inconvenient (I remember having to test and inject in an overcrowded motorway grill-bar… never more!).
    Another attitude I find specially annoying is the 'avoiding strategy' many people seem to adopt: they avoid even the name of my condition, they do all they can to conceal any hint at it, persuaded that this will spare me 'embarassing' explanations. So I get no chance of laughing at misconception and educating a bit…But again, it would be considered as a lack of manners.
     
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  18. ickihun

    ickihun Type 2 · Master

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    I have to agree doing mdi attracts alot of attention and unexpected hypos. Does the pump make that part easier, or not really?
     
  19. lisa_r

    lisa_r Type 1 · Newbie

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  20. lisa_r

    lisa_r Type 1 · Newbie

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    I always test in public and my daughter got diagnosed at 3 and have always encoraged this. However i feel the biggest stigma is employers. I had one experience where i was a sales advisor in a chemist. I opened shop on a sat and first customer came in and suddenly the dreaded hypo. Sweating massivly no concentration we all know that feeling. The pharmicist who should know the symtoms just got cross with me and said what is wrong with you!! Thankfully the customer totally understood as his wife was type 1. But it continues. Like not being able to get access to food or carry extra supplys to having to wear steel toe caps when i have neaurology in my legs...it goes on and on
     
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