Do you think Type 1 Diabetes is an easy disease to have?

[fedupofthisshite]

I am just curious about what people think, what their impressions are. "Diabetes" is frequently used as the punchline for a joke about some unhealthy food, and while this is mostly aimed at Type 2 (I feel nothing but sympathy for Type 2 people as well, btw and just wish the jokes would stop) it's still quite shit because it seems like everyone thinks diabetes in general is something pathetic that you snigger at.

I have Type 1 almost 30 years and still get days where I fucking hate it so much. Today is one of those days...

It has taken an awful lot from me and I wonder what my life would be like otherwise.

Yes. Or due to certain medications. I have neurological condition being treated by a heavy dose of steroids that put me at high risk of developing T2. I was very fit and healthy previously. I hate that people will think it is my fault if I get T2.

My DH is currently terrified that he's going to lose his feet. They've been numb since he was in hospital and a lot of the time they feel freezing like no circulation going to them.

Hes only 40 and works in a job that's 95% on his feet so won't be able to do that anymore.

I'm seriously worried as well but trying to hide it from him.

I dunno. Not easy exactly, but people with T1D can have extremely full and active lives, maybe it can be easier than having T2DM.

Was that meant to be another 'joke'? You do realise that T2 generally affects people over the age of 40, so mostly beyond elite sports champion age anyway? I'm very happy for those people, but as well as maybe bringing inspiration to some folk with T1D, people like them can also be used as a stick to beat those with T1D who aren't in such a fortunate/privileged position as they are: "Well, if they can do it, you obviously just aren't trying".

I've had T1 for 21 years and I despise the 'jokes' too. People don't understand that it can adversely affect pretty much your entire body, and they don't actually care in any case. It's the nature of any hidden disability, that 'know-it-all psychic doctors' will denounce you as lazy and smugly declare that 'there's nothing wrong with them'.

I've heard people brush it off as 'their own fault' (not in quite those words) when somebody with T1 dies young - almost as if they had a button labelled 'keep living with no noticeable problems' but just couldn't be arsed to press it. It's widely assumed that, if you don't eat sweet things, you'll be fine; but if you give in and have chocolate at any point, you pretty much wanted to die.

Living with T1D is a bit like managing a strict financial budget, except that nothing is priced and you don't know how much your income will be. Of course, you can have an educated guess at both of them, but so many variables are waiting around the corner with a cosh to 'surprise' you and nullify your hard work, it seems thankless.

I don't like the way that everybody assumes that 'diabetes' = T2; but then I also hate the way that some people (with or without T1) try to make it into a competition: 'T1s are blameless and worthy but T2s are just fat/lazy/unhealthy/asking for it'. Aside from that being a grotesquely offensive oversimplification, how does it help anybody to feel better about their serious health condition by criticising other people with a related condition?

Also, it's not the main irritant by a long chalk, but the sheer number of people who will say "Ooh, I couldn't do that [inject myself] - I hate needles!!!" Lucky for me, then, that regularly stabbing myself was already my favourite hobby before I was diagnosed, so I didn't have a difficult or painful 'choice' to have to make....

It also gets rather tedious - as for anybody with chronic pain (whether from diabetes complications or anything else) - when ordinarily-healthy people will complain incessantly and dramatically to you about how much they're suffering when they get a short bout of temporary pain, when for you, that's just non-stop for the rest of your life. I'm guessing that full-time wheelchair users feel similarly when somebody sustains an injury, has to use a wheelchair for a week or two, and makes out like their life is the hardest that anybody could ever have to endure.

Mum of a 13-yr-old T1. Like other parents, I'd willingly take it from her. I don't think anyone who's not directly affected has any idea what in involved in managing T1 - and that includes me until it arrived in our house. I knew something was wrong for some time - like 6 months - before she was diagnosed (changes in mood & behaviour) and TBH was relieved to find out what I wasn't imaging it.

Had no idea that every.single.thing that passes her lips has to be considered, calculated, and insulin adjusted when necessary. No idea about the sleepless nights & alarms. No idea about worry about waking up in the morning, or about having to carry kit & treatments everywhere. She's now using a pump & CGM, which makes it easier but still the mental load is unrelenting.

@fedupofthisshite Type two diabetes is often as a result of lifestyle factors. It can also sometimes be reversed, and is often controlled just by diet alone or pills for a significant length of time.

So that is serious enough anyway but not intrinsically like type 1 which people are usually born with, did nothing to bring on, can't control as easily, usually requires injections, and has a major, clear effect of limiting people's lives.

Don't get me wrong, type 2 is bad and often has serious consequences too though. My dad has type 2 (age related) and my sister has pre diabetes which is probably a combo of her weight and genetics. I hope I don't get it.

So sorry you have to live with this disease.

T2D is indeed a very serious condition, and I despise the people with nothing better to do than blame and sneer at people who have it, as if that helps anybody.

It looks like developing T2D is dependent on having a certain gene/innate susceptibility, so it's not a level playing-field for who does or doesn't get it, regardless of potential poor health or dietary choices.

I suppose one big difference is that, because T2 doesn't normally come on before the age of about 40, somebody with T2 will, on average, have far more diabetes-free years of life than somebody with T1 and thus fewer years for the long-term damage to have an impact. If a 5yo gets T1D and then dies from it/related complications at 40, that's obviously very tragic indeed; but if a 45yo gets T2D and dies from it 35 years later, they obviously made it to a fine average old age anyway, in spite of the condition.

it annoys me when they are seen differently. They are both serious and both deserve the same amount of respect and empathy.

I'm finding just being pre diabetic worrying and no picnic - so I can only imagine the stress and worry and control needed for T1- anyone laughing or making jokes about any chronic condition can go and do one!!

Exactly.

That's a completely reasonable distinction, I agree..and this is how I have made my peace with my neurological diagnosis and how I will feel if steroids give me T2 diabetes.

But the horribleness of knowing you won't just have a nasty health condition but that people will judge you and sneer at you is quite awful.

My son has a close friend with it - they are both 12. His mother worries about him every day, they have to keep such a close eye on his food, medication, etc.

I also have a colleague with it. He frequently feels faint / passes out / we have called him an ambulance on more than one occasion. It was a revelation to him to recently get a kind of automatic pump/implant for his insulin, but it's still very tough.

YANBU, it looks exhausting and I can see how serious it can be. Much sympathy and strength to you.

Your last paragraph displays perfectly the huge ignorance there is towards type 1, the fact that your son has it is says it all.
Your son may currently find it relatively easy to control his diabetes, he may just be fortunate or like for many this may get harder as he gets older.

Type 1 can vary enormously in people, my dh has a hugely brittle form of diabetes and so definitely is at risk of dying in his sleep.

He tries so hard everyday to stay in balance, has a hugely supportive diabetes specialist, a sensor and pump system etc but still it's a constant slog for him and a never ending worry for me.

SweetSakura not sure I can help much but I just wanted to give you some support. My Mum has Myasthenia and Diabetes, both horrible conditions and managing the two can be very difficult. Especially as there is little awareness of MG.

Thank you, it's appreciated! And I feel for your mum!. Managing it combined with diabetes must be so tricky. I resisted steroids as long as I could for that reason, but ultimately I needed to get the myasthenia under control. I have found Myaware very helpful, but it is definitely tricky having a condition even most medical professionals don't understand.

I have a 6yo with T1 and it's exhausting and absolutely never ending. I used to wish I could have it instead of him and then I ended up getting it as well as him so, that was great 😂 Some days are much better than others but so often I just don't sleep and it is just so bloody relentless and unpredictable. You can never switch off or take a break. Autoantibody tests have shown that our youngest will most likely develop it within the next five years and I'm absolutely terrified of how we're going to manage 3 of us with it. I wouldn't wish it on anyone. Sending you a hug, OP, it can be so hard.

Could you explain about these antibody tests please?

Are you just referring to the ana positive/negative as our doctor told us lots of people can test positive and never develop anything. Or is this something quite specific? Thanks

@Willyoujustbequiet absolutely, we live in the US now and out here there's a push to provide testing for immediate family members of T1s (in our case, my son) to aid in early detection and reduce the likelihood of people having to go into DKA before it's picked up. If you test positive for autoantibodies, you then have the option to enroll in prevention/delayed onset trials that might be available. You can read about it here: www.jdrf.org/t1d-resources/t1detect/#faq.

Thank you! That is most helpful.

Well, sure. But I imagine that there are things that you don't know, that someone else would consider you lazy and pig ignorant for not knowing about. I imagine that you don't think you are either of those things for not having a functioning knowledge of everything.

We can't ask for perfect knowledge and awareness - only tolerance, understanding and acceptance when people are confronted with the unfamiliar.

As you can see from my username I have a child with T1.

My heart goes out to everyone affected by it. I can read the tiredness in the posts of the T1s on this thread and it breaks my heart that my child will one day feel that same feeling.

Every single thing they do is affected by their diabetes. There isn’t a time we’re not thinking about it, planning for it, preparing for it. It’s absolutely constant and there’s no days off. You can just say ‘fuck it’ for a few days to have a break.

It’s just a huge huge thing and every day you’re looking after them you’re also looking after future them too. It’s a hell of a responsibility.

@Willyoujustbequiet there’s the ELSA study

It's an awful disease. 💐

I had a boyfriend with it when I was in my early 20s. He was massively irresponsible and did not manage it well at all. There were a few occasions after a heavy night out where I woke to find him paralysed and sweating. Me and my housemates would get him sat up then give him sugary lemonade through a straw. Probably should have called an ambulance upon reflection, but he always came round after a while.

Should my DD get tested for T1 diabetes as her father has it? She's 25 .

As a parent I wish there was a cure so much! My child starts secondary school I September and I really don’t know how they will manage their diabetes at age 11 by themselves. Such a worry. Also hate applying a libre sensor as we have tears every time. Wish they would invent something that could tell blood sugars through the skin!

Can I just say to all the mums posting -

My mum was so supportive of me when I was diagnosed and really looked after me. This was back in the day before any tech. It is only now as an adult that I realise, more and more the older I get, the huge weight of it on her.

The most amazing thing is all the work she did to keep me as healthy as possible is what is standing in my favour and I honestly believe that's why I am as healthy as I am now.

I do have some complications but they are manageable and in the grand scheme of things...well everything could be a hell of a lot worse. And I am so thankful every time I think of what my mum did for me because I truly believe things would have been a lot worse without her brilliant support.

Back in the nineties you were considered as having great control if your hba1c was under 7.5 as a child, I think it was 7 for adults. So I'm not talking about the perfect levels of hba1c lots of parents strive for now with their kids.

My mum took on so much of the burden of diabetes I really didn't feel how heavy it was at the time - I was free to be a child. And I am so thankful for that.

But she didn't shield me or lie to me, we talked about everything to do with diabetes and I did my own injections and was very confident at talking about my diabetes - she equipped me with that confidence about it.

It was still hard, but for me as a child and young teen it was so much lighter, because of my mum.

The worst period for me was as a young adult when she was very sick and dying and the years after her death. I was quite vulnerable and had far less support.

Your children will remember all you do for them with so much love and gratitude.