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

[Chook]

I've had a more than a couple of fairly annoying experiences with people who insist they know more than me about my condition so I decided a while back to avoid any further such conversations and only talk about it with people a) who also have it b) who really need to know about it for my safety or c) who show a real interest.

Its very rare for people to show a real interest, why should they? There's loads of conditions I know nothing about.

 

[Bic]

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.

What a great work you are doing! I never heard of anyhing even vaguely similar in my area… You can be proud of it, bravo!

 

[JohnEGreen]

When I think back to the mid 1980's when I was sat in a pub having a jar or two with a friend who was T1 I in all innocence asked him if quite so many lagers where OK for him as a T1 I got a rather contemptuous and drunken response uttered in not so subtle Anglo Saxon type words that was the first and last time I ventured an opinion on the subject.

 

[Circuspony]

I have to confess I find my mum's attitude towards me being T1 really annoying! It's lucky I was diagnosed in my 40s because I dress to think how she would have coped if it has been diagnosed in childhood.

I know some T1s can eat anything, inject and be ok - I can't. Visiting is hard because she insists on carb loaded meals with big desserts. And then she gets upset because I don't each much....

Oh and I've had the "I read in the Mail that it can be reversed by 800cal a day diet" stuff.

**sigh**

 

[Japes]

I have to confess I find my mum's attitude towards me being T1 really annoying! It's lucky I was diagnosed in my 40s because I dress to think how she would have coped if it has been diagnosed in childhood.

I know some T1s can eat anything, inject and be ok - I can't. Visiting is hard because she insists on carb loaded meals with big desserts. And then she gets upset because I don't each much....

Oh and I've had the "I read in the Mail that it can be reversed by 800cal a day diet" stuff.

**sigh**

This - so much! I am so, so thankful, from a diabetes point of view, my mum died long before both dad and I were diagnosed (Dad 15 years or so ago, me, more recently) because her only way of coping would have been to place large carb-laden meals in front of us, meals of a kind I certainly can't just carb-count, inject for and hope for the best! Then we'd be getting told off by her for not losing weight or controlling our blood sugar numbers better whilst simultaneously being told to eat everything we were given, whether we wanted to or not, and "Just once won't hurt".

 

[Chook]

This - so much! I am so, so thankful, from a diabetes point of view, my mum died long before both dad and I were diagnosed (Dad 15 years or so ago, me, more recently) because her only way of coping would have been to place large carb-laden meals in front of us, meals of a kind I certainly can't just carb-count, inject for and hope for the best! Then we'd be getting told off by her for not losing weight or controlling our blood sugar numbers better whilst simultaneously being told to eat everything we were given, whether we wanted to or not, and "Just once won't hurt".

I loved her to bits but you are describing my late Mother-in-Law to a T. It was all done through love which made it all the more difficult to refuse.

 

[KK123]

I have to confess I find my mum's attitude towards me being T1 really annoying! It's lucky I was diagnosed in my 40s because I dress to think how she would have coped if it has been diagnosed in childhood.

I know some T1s can eat anything, inject and be ok - I can't. Visiting is hard because she insists on carb loaded meals with big desserts. And then she gets upset because I don't each much....

Oh and I've had the "I read in the Mail that it can be reversed by 800cal a day diet" stuff.

**sigh**

I feel for you, it's one thing some distant friend or random stranger coming out with ignorant nonsense but it must be hard when it's your Mum! I suppose in a way (depending on age) the consensus used to be that the insulin itself was the medicine which you HAD to take a fixed amount of 3 times a day thus you HAD to eat numerous carbs to stop you going hypo. x

 

[tinyroman]

You know what bugs me the most? Being told that every non-diabetes related condition I have is because I have ‘poorly- controlled’ diabetes.

TypeZero nails it when s/he talks about stress. I’m age 66, have had T1 for 40 years, being diagnosed when I lived in Canada (which I hated). My life seems to have been plagued by family deaths ( sorry, that sounds a bit dramatic, and I’ll not go into it, but unfortunately it’s true), constant illness, other horrible things, and for the last 20 years fully caring for my invalid mother who’s had dementia for the last 8 years. She finally went into a care home three years ago, and I thought, “At last! Free! I can live like a normal person. Hooray!”
Instead it seems as though all sorts of conditions were waiting in the wings to pounce. And every time a new condition crops up, I’m told it’s due to poorly-controlled diabetes.
My latest, osteomyelitis in the jaw, was left untreated as it started just before the beginning of lockdown; my dentist said ‘take paracetamol’ and the gp wouldn’t see me because it was a dental problem. The pain I was in for 3 months was indescribable. In the end I took myself to A&E because I could no longer stand it, where I was given a course of antibiotics, followed by another 3 courses before the infection settled down. Couple weeks ago I had a CT scan.
So now I have an appointment for September to discuss treatment. If that doctor says the words ‘poorly- controlled diabetes’, I swear I’ll swing for him.
It feels good to get that off my chest. Thank you.

 

[porl69]

So now I have an appointment for September to discuss treatment. If that doctor says the words ‘poorly- controlled diabetes’, I swear I’ll swing for him.
It feels good to get that off my chest. Thank you.

Just a note....has your diabetes been well controlled over the 40 years? I have been T1D for 49 years, I am very well controlled now BUT for the majority of my 49 years it was poorly controlled. I am blind in one eye and have stage 4CKD. I am at fault totally for the poor control leading to the problems I have now.

 

[Aaandyyy]

Don't let it worry you. I've been T1 for 54 years since I was 2 and yes, certainly had issues with other peoples perception and perhaps even worse in those days, being wrapped in cotton wool at times! I think the biggest improvement was when I figured I wasn't worried about other peoples thoughts. If your sister and neighbour make life difficult for you (probably unintentionally I hasten to add) then find others to hang out with. An added bonus too, enjoy your life and the stress will drastically reduce.

 

[Mally666]

My neighbour and older sister literally have no idea what a life with T1D means even though I have explained it multiple times.

Don’t you guys just hate it when people don’t want to understand. They think I’m being over the top by carb counting and prebolusing for meals. They refuse to understand that everything practically has carbs in it and my body makes no insulin at all so every bit of stuff I eat makes my BG rise and even without food my BG rises due to dawn effect, stress, illness and so forth.

Is it just me that experienced this with people around me?


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I’ve been trying to convince my brother for 69 years how difficult it is to cope with T1 am I banging my head against a wall, you bet I am, I’ve just given up on anyone understanding even some of the so-called specialist who say they understand. Malcolm

 

[Po girl]

My neighbour and older sister literally have no idea what a life with T1D means even though I have explained it multiple times.

Don’t you guys just hate it when people don’t want to understand. They think I’m being over the top by carb counting and prebolusing for meals. They refuse to understand that everything practically has carbs in it and my body makes no insulin at all so every bit of stuff I eat makes my BG rise and even without food my BG rises due to dawn effect, stress, illness and so forth.

Is it just me that experienced this with people around me?

Oh yes I’ve been at it for 47yrs and family are ok but work colleagues and fiends just don’t get it. It’s certainly a daily battle trying to maintain blood levels and it still drives me crazy. Covid hasn’t made it easy as some people think it’s just diabetes ‘you’ll be fine you don’t need to worry!’
Keep with it !

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[Tugba]

I really resonate with this. I agree that people without diabetes can find it very hard to understand as they do not have it, but don’t say ‘it’s easy’ or the like!

We understand that non-diabetics will never truly comprehend what having the condition will feel like but I don’t think it is right to make uneducated comments about it either. My favourite one being ‘you had too much sugar, that’s why you got diabetes’!!

 

[Ermintrude75]

I've learnt to lower my expectation of some others then I Can't be disappointed.

You can't educate them if they don't want to be educated.

I have 2 chronic diseases and Certain they have cut me off not wanting to know supposedly it has Upset them that I'm ill. Yet on the other hand I was in for an operation just the one night and I didn't tell them. You can't win. Then I got told how lucky my child is they're not fat as the won't get the disease. They got a lecture.

I now socialise as little as possible with them as I am related to them. I keep everything short one word answers. It may seem rude to some people but I am looking after myself. Less stress means better bloods sugars for me

 

[jimmythepincil]

My neighbour and older sister literally have no idea what a life with T1D means even though I have explained it multiple times.

Don’t you guys just hate it when people don’t want to understand. They think I’m being over the top by carb counting and prebolusing for meals. They refuse to understand that everything practically has carbs in it and my body makes no insulin at all so every bit of stuff I eat makes my BG rise and even without food my BG rises due to dawn effect, stress, illness and so forth.

Is it just me that experienced this with people around me?


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if they havnt got diabetis they dont understand what its all about and how hard it is to eat meals that u like and not worrying about the carbs

 

[Timbo7852]

expecting others to understand is an impossible wish, diagnosed in 1961 age 9 I have had plenty of problems as you might expect, at school, in work ect, even my wife, married 1975, does not really understand sometimes, but that is not her fault, but we get along great, the bottom line here is you really can't expect others to understand, and the more we carp on about it the harder it gets, not only for others but for us as well.

Regards Tim.

 

[johnpol]

To be fair it would be very unusual for anyone who doesn't have diabetes to understand what it entails as they don't live with it on a daily basis. I only get vexed when people assume that everyone with diabetes is a Type 2, overweight, unfit and I quote "It's your own fault, because you eat sugar", I've had this said to me on more than one occasion, my wife has Crohns disease and even after more midnight Blue light trips to hospital, numerous operations I still don't understand just what it's like to live with it, and I have been there through it all. I don't think anyone can truly know or understand what it's like to live with a life long condition. I educate where I can and ignore the more "entertaining" comments, and don't get me started on the comments on my pump!


Take care everyone and stay safe

 

[Tophat1900]

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

Perhaps these people giving unsolicited advice just happen to care about you. It may be misguided a lot of the time, but it just seems to me you have a lot of people around you who care. Which is certainly better then some people who have no one or very few people who care about them. I understand it can be irritating, but sometimes it's worth stepping back and just remembering that it's good to have people around you who care. Even if they drive you nuts at times....