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Don’t you just hate it when people think diabetes is easy

Discussion in 'Diabetes Discussions' started by TypeZero., Jun 27, 2020.

  1. Robbity

    Robbity Type 2 · Expert

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    I'm sorry if this sounds harsh, but we do have to accept that our main health priorities are not those of other people. And I suspect that your neighbour and sister may well find it as irritating to be constantly reminded about your diabetic issues as you find it irritating and upsetting that they appear to be ignoring them. It can work both ways.

    If your sister is spending time with you, she ought at least to understand and know how to deal with hypos, but unless she's responsible for catering for your dietary requirements, does she actually need to know and be regularly reminded of all the fine details?

    And does it really matter that your neighbour doesn't understand the minute details of how you handle your diabetes - unless they're acting as your carer it's not their responsibility to do so - it's your diabetes not theirs, so they're obviously not going to give it the same priorities as you have to, however hard that might seem. And to put it in perspective, would you feel obliged to understand in similar detail how any issues in their life may affect them?
     
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  2. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    To be honest, @TypeZero. , I set very low standards for others viewing or understanding what I might or might not have to do in terms of managing my health.

    If I am dining with others, in their environment, I never, ever ask for concessions or changes to be made to accommodate my needs. I eat low carb, and also gluten free. If I inadvertently consume a few hidden carbs I don't notice or are unexpectedly in a recipe, I don't get out of shape about it all. My bloods might go high , but I'll cope.

    If I inadvertently consume gluten, the depending on what and how much there is in whatever I have eaten or drunk (yes, there is gluten in some drinks too) I can end up debilitated to a greater or lesser extent for up to 3 weeks. Yes. Weeks.

    But I am the one with health issues I need to manage.

    In reality, it is my personal view that few people are actually interested in what we have to do - provided it doesn't hit them between the eyes.

    In your shoes, I would instruct those closest to me how to deal with things if they were to find me unresponsive or incoherent, and the expected action would be that they call 999. I wouldn't ask them to make judgements about whether I was high, low or anything else. The messaging would be to seek professional help.

    I'm sure all that sounds quite harsh and judgemental of people, but to be honest, it makes it simpler all round. They are not charged with learning stuff they will likely never quite get their heads around, and I don't find myself continually frustrated because someone yet again shows they just don't get it.

    It's early days for you still, but cut your folks some slack. They're likely still struggling with getting their heads around your diagnosis.
     
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  3. TypeZero.

    TypeZero. · Well-Known Member

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    It’s not really so much about my care but they act hostile thinking I’m exaggerating which is annoying me.

    My sister does cook for me but I don’t have specific dietary requirements apart from knowing the carbs. Everyone around me is so interventionist, you would know if you were me. I have some random aunties I never knew who call in to say I should eat cinnamon and yoghurt which will stabilise my BG apparently. It just frustrates me hearing people say such things and I really don’t care about if they understand my disease or not but it’s just the repetitive unsolicited advice they give as if they have any clue. And I give them the basic information they need to know yet they’re so clueless and still try to give me advice.

    It just makes me so angry hearing people like my mum and sister say “oh you were eating fast food often that’s why you have diabetes” despite me explaining the autoimmune nature of T1D and the most accepted scientific theory is a virus triggering it along with several other factors such as low vitamin D.

    Just to let you know, it’s not me who keeps talking about my diabetes and bragging about it. It’s the people around me who are always trying to give me advice and force me to eat their food— I’m sure you’d agree this is really annoying
     
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  4. TypeZero.

    TypeZero. · Well-Known Member

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    I really don’t ask for attention or brag about my condition. I mean who would? It doesn’t make us better than anyone.

    My problem is the intervention of others who won’t let me do my own thing and keep giving me random unsolicited advice that offers me no benefit at all.

    All they have ever known is Type 2 diabetes, they never knew there was a Type 1, I suppose if they heard about Type 1.5 or 3c then their minds would explode. Most of the T2s they know do not require insulin so they just assume it is something I can fix with diet and daily tablets. I’ve had a neighbour tell me that “it’s not that deep” and that apparently I’m “exaggerating so much” because I wake up around 4am to inject a unit of insulin to counter my dawn effect— I mean if I didn’t then I would be on 8-9 mmol/L before breakfast.

    Sometimes when I eat vegetables and try bolusing for it they’re like “does that even have carbs you’re mad”

    You get the gist. Imagine hearing this at least weekly or daily. It drives me mad. I cannot understand how people manage their own conditions because I don’t have their condition but at least I don’t offer constant unsolicited advice and commentary which offers me no benefit at all and in fact causes my blood sugar to rise because I get angry.
     
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  5. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Random, unsolicited advice is something everyone gets about almost everything, and trust me, you will have done this many, many times yourself - whether you realise it or not.

    You seem to think Type 2 is a stroll in the park. Trust me on this. It's very different to T1, but it's not necessarily simple. Let's just use that well-worn saying, "Before you judge a man, walk a mile in his shoes" .

    Frankly, you are allowing your neighbour to irritate you. That's your problem. Not theirs. Ignore them.

    There's a saying, "Opinions are like *********. Everybody has one." Never has there been a truer truism.

    Whilst nobody should feel they should have to hide their diabetes (or anything else for that matter), there are times when sharing information can quickly become sharing too much information.

    I can recall years before my own diagnosis, chatting with a neighbour, about this and that. During that conversation she made reference to someone who lived nearby, but whom I didn't know. When I intimated this, my neighbour tried to describe the lady concerned. It went something like this: "Of course you know X. She's the diabetic lady."

    What? What? I never, ever want to be labelled in that way, or for diabetes to become my primary identifier. I have zero wish to be "the diabetic lady".

    You are very early into your diabetes, and in no time at all, hopefully, people like your neighbours will have something else to talk about, but why feed them gossip material?

    Many of these outcomes are in your own hands.
     
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  6. Jaylee

    Jaylee Type 1 · Moderator
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    Hi TZ,

    My take on it? Try mixing it up a little socialising with people around your own age.
    I wass a little younger than yourself when past my test got a car & was gone most the night, then back for work following morning...

    When your folks get to trust you can come back in one piece & still honour the obligations.
    You might just find perspective changes from both sides of the fence.

    Are there no T1s at all in what sounds like your extended family you could confide in? (Sort of "talk shop.)

    Best wishes.
     
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  7. TypeZero.

    TypeZero. · Well-Known Member

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    Hi,

    I, in no shape or form, see T2D as a milder or “better” disease because at least T1s can inject and bring down the BG but T2s can struggle with severe insulin resistance and despite injecting units upon units their BG refuses to come down.

    However the T2s in my family are all insulin-independent apart from 1 person. The rest manage it by diet alone so I kind of understand why people struggle to understand T1D because they think all diabetics can get away with eating healthy and exercising.

    I’m not embarrassed by my disease. I don’t even care about injecting in the middle of a supermarket I just want to dispel myths about me causing it because I ate too much and that I can cure it with cinnamon and eating healthier. I think from now on it’s best to hide my diabetes I guess because I’m getting too much unwanted attention but it’s difficult because things spread like wildfire in my family, if you tell 2 people something the whole village knows it. I lost count on the number of people calling my mum to say “hope he gets well soon”. I think my parents made the situation worse by telling my grandparents who basically told everyone they ever knew
     
  8. Antje77

    Antje77 LADA · Moderator
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    Trust me, the attention will wane.
     
  9. TypeZero.

    TypeZero. · Well-Known Member

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    Well I do socialise with some people my age but I’m 18 so our school ended this year. There’s this thing that happens when people speak to you until school ends then they just keep you on social media but never really talk to you. It’s quite a common thing in younger people, I guess they just “move on” to their next chapter of life. I still talk to many people though but I don’t want to go on and on about my diabetes with them— they just know I am a T1 diabetic and that’s all they need to know in case I faint next to them. There’s nothing really to discuss with them about and this whole coronavirus situation means I’m bored at home all the time. The most interesting thing I do is walk to Tesco 1-2 times a day to get food so imagine how lowkey depressed I am.

    I’ve been out shopping by myself and everything is fine as long as it has been at least 3-4 hours since my bolus, as the effect of the insulin runs out my body can increase its BG naturally so I don’t need to worry and I can literally walk around for 4 hours and have a flat BG profile.

    My mother’s cousin’s child— which is my 2nd cousin I guess?— has T1D but she’s like 11-12. I don’t really know her and I don’t want to really speak to a child since I’m pretty sure she doesn’t manage her diabetes but her parents do. I think because she is young and her mum is a bit clueless they put her on a very simple insulin regime— apparently she takes 2 injections a day and I really can’t imagine her mum carb counting.

    Because I am so bored and have nothing but my diabetes to think about I’m on this forum quite often and one day apparently I checked my Libre 96 times!
     
  10. Lupf

    Lupf Type 2 · Well-Known Member

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    @TypeZero. According to your profile you are only 18 years old. Any health condition is not easy to come to terms with and diabetes at such a young age must be very difficult. I am impressed by how well you and others handle it, but in my view you have a right to be angry at whoever annoys you. So you have my sympathy that you are frustrated with your sister and neighbour are not getting it. Hence I will refrain from giving you any advice. Best wishes and hopefully you will manage
     
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  11. Mrs T 123

    Mrs T 123 Type 2 (in remission!) · Well-Known Member

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    Hi TypeZero - I agree with what Lupf has said to you and ....... I know people also who just don't get it - please don't let anyone annoy you - as stress isn't good for any of us - just use your energy on looking after yourself - lockdown has been hard for everyone and a lot of people are getting annoyed with things that don't usually annoy them - loathing lockdown. Take care and I wish you well!
     
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  12. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    To be fair, if didn't mix it up with the guys I went to school with either.. But I did hang out with others from the "rival" big four in my area..?
    Some I hardly saw after junior school & got reacquainted a few years later. One person at the time I have to thank for opening the door to a chain on interesting developments in opportunities over the years.
    I'm still in regular contact with guys during this CV19 thing. We just make music over the net. The worst I have to worry about with my neighbours is the recording noise may sound like an argument with my wife.
    My neighbour is also T2. We're cool & have an understanding on all fronts.

    (I'm not gonna try & work out where your Mum's cousin's kid fits into the family tree.) But, unless you let the kid talk you won't find out.
    I was on two shots a day & the "care package" at my school was the support of an 8 year old me..
    I'm sure the kid & her mum can only work with what's prescribed..

    "Marty McFly" time.. You may find you will have no-one to & nothing else to blame if you move forward with a cynical view on life.
    I spent time in separate bands briefly with a T1 bassist & T2 drummer. They didn't last that long with the "norms." (Non-D members of the respective groups.)
    I did defend both thier corners. But eventually, (& sadly.) I did have to concede they weren't team players...

    Good luck.
     
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    #32 Jaylee, Jun 29, 2020 at 2:01 AM
    Last edited: Jun 29, 2020
  13. kev-w

    kev-w Type 1 · Well-Known Member

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    I feel comfortable injecting wherever/whenever I need to but unfortunately some T1's are stigmatised for doing so, TM isn't a good example as an 18 year old T1 is much more likely to have a lot more injections per day and a lot more variance in their blood sugar readings.

    But you're right, Henry Slade is a very good ambassador for T1 diabetes..
     
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  14. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi,
    Diabetes can be like riding a tiger, if you let go, it can savage you, but if you hold on, you might be able to steer it away from potential harm.

    Tbh, I must say I haven't had any negative responses, my daughter has full knowledge because she has grown up with me as a type 1, she care (,also my other two children who are older) but she doesn't mollycoddle me or berate me. No one makes a big deal out of it. I have talked with people about it, (in one of my jobs I promote food brands) if they mention diabetes. Last year in my local supermarket, an older lady saw my new sensor on my arm and thought I had a sticker stuck there, I told her what it was and she was fascinated and she said she hoped I wasn't offended by her, asking, a big no was the answer, we had a lovely chat.
    Some family members and friends may find it difficult to understand or even acknowledge it, but they will have to get used to it, as it's not going to go away.
     
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  15. Japes

    Japes LADA · Well-Known Member

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    Ah, the joys of those around you telling you what you should/ shouldn't be eating and repetitive unsolicited advice! I think, regardless of health conditions, that's what some families/random aunties just do...if it wasn't your diabetes, it would be something else, honest. My dad, to this day, will not let me have or buy me a drink with ice in because he thinks it is bad for me. (I'm old enough to be your grandmother, just, so I think I'm OK to make that decision for myself - just not in dad's eyes.) Mind you, he's also T1 and never criticises my management of my condition in his presence, just as he would expect me to let him get on with dealing with his in his own way!

    Most people won't be ever be getting the difference between the types of diabetes, especially if they are relying on the popular sensationalist media outlets for information! But, some people will always be looking for "something" to blame and it seems easy to say fast food or what you eat. Some mums can be blaming themselves, and some siblings panicking they may be next...

    So, my tuppence' worth of unsolicited advice is - once you've explained it, don't waste your time re-explaining and learn to smile sweetly and ignore the unsolicited, useless advice. It'll be better for your stress levels and blood sugars (that kind of stress can raise mine without any effort). Easier said than done, I know.
     
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  16. porl69

    porl69 Type 1 · Well-Known Member

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    As has been said earlier in this post, what do we know about other conditions such as lupus etc? They don't need to know SO they have no idea.........
     
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  17. JohnEGreen

    JohnEGreen Other · Master

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    Doesn't stop them judging though and pontificating after absorbing all the prejudicial nonsense written in the Daily Mail and other so called newspapers together with the output of other media sources, for people who don't have a clue about diabetes they seem to have a lot to say about it. Best to ignore them.
     
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  18. porl69

    porl69 Type 1 · Well-Known Member

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    They judge because they do not know the differences in the different types.
    I often get told that I am too skinny to be diabetic and am asked if i got my diabetes from eating too much sugar and the likes. And that, as you rightly say, is the faulty of the mis-informed media and also TV programmes, who should do a bit more research before using diabetes in any stories
     
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  19. Bic

    Bic Type 1 · Well-Known Member

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    Perhaps you may try asking THEM (whoever it is that is being dismissive) to make the calculations for you, just for once. First let them list all the items they will have to factor in, asking 'Aren't you forgetting X?' every time they happen to overlook some. Then, have them calculate how much insulin to use; where to inject; what, how much of any single thing and when to eat; what to do or not to do in the following couple of hours… in no more than a minute (twice as much as it would take to you). Of course you don't need to actually do what they suggest, for your own safety's sake. Just let them try their hands at the real job – a tiny part of it, that is. I tried it sometimes and it worked. Besides being rather amusing, I must confess.
     
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  20. Japes

    Japes LADA · Well-Known Member

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    Oh yes! I do this with colleagues who are doing the diabetes training to support students who are unable, for whatever, to do their own diabetes care. It's been invaluable for all kinds of reasons. Part of my work when I actually am at work with my students with multiple additional needs, not supporting from a distance via the mediums of video calls, e-mails and the Royal Mail involves direct support with T1D students.

    Now, this year, I've been lucky and all I really need to do to support is confirm the numbers on both meters and insulin pens, and ensure the food is actually eaten! Or deal with the hypo brain. Apparently, I have a reputation as a bit of a specialist for support with diabetes of all kinds with all its curveballs...

    It's highly entertaining when I have to go through the training myself, which is absolutely essential for me to do this well, and I won't do it if my training is not up to date, but luckily I am now known to the training providers and they are more than happy for me to provide practical, hands-on examples and kit for those brave enough to try. Especially when the kit they bring doesn't match anything either I or the current batch of students use. I do agree to behave myself... With my direct colleagues, they are all allowed to practise doing blood tests on me, if they wish, which has probably been more helpful to them than anything else, they say. I also, if we have to do carb counts for students, make them practise working out my lunch.
     
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