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.

@Jourdain11 - At school, a TA said she must have eaten too much unhealthy food because that's what gives people diabetes.

I hope you made a complaint about the TA? Even if the TA genuinely did believe that's how people get diabetes (no excuse for it, but she wouldn't;t be the only person in the world who incorrectly thinks this), why on earth would she make such a judgemental comment to a 10yo, especially in a setting where she is supposed to act professionally?

Two of my three have T1, got it when they were small children. At 11 they switched to using pumps, and they absolutely swear by them – I see quite a lot of people on this thread already use pumps either for themselves or their DCs, but for those who don't it's definitely worth considering.

The other huge factor was going to a diabetes clinic which really, really understands the condition. The local hospital wasn't great and we have yet to find a GP who knows what they're talking about (no offence to any GPs on here, but that's been our experience over 20 years), but the clinic they go to now is fantastic – they are up to date with all the latest research and theories, but also accept that it's a difficult condition to manage and are realistic in what they aim to do. Teenagers in particular don't like to be told what to do (at least mine didn't), so they need to be positively encouraged and given small steps for things they might be able to improve rather than be shouted at or told they aren't trying hard enough, which is also bad for their mental health.

FWIW if anyone wants a positive story (so far!), my 2 are now in their mid 20s, one works in sport and exercise, and does hardcore gym training every day. He works abroad half the year. The other has been to 2 different universities and is currently travelling on the other side of the world, arranging for her pump supplies to be delivered to different locations every couple of months. It's nerve-wrecking as a mum, but I'm proud of what they are managing to achieve.

Good luck and best wishes to everyone out there.

That's awful.I hope the TA,was educated about type 1?

Another one with Type 1 Diabetes here (for 25years). And my mum has it as well (for 50 years). I wish I knew what it felt like to be healthy for a day, to not have to consider every mouthful, every injection, every activity. And to go out the door without carrying a bag full of equipment and food. That’s it simplified. The reality of Type 1 diabetes is that it’s soul destroying, the bane of our lives. And nobody understands unless they live with it. And the depression, the burnout, the tiredness, the lack of energy, the weight gain, the disturbed sleep, the paranoia that you may not wake up in the morning…all encompassing.
But not to be all doom and gloom! With the Dexcom/Libre(I’ve had both), life has become a little bit easier with regards to catching lows and highs. And a good diabetic clinic, and a group of people around you who understand or can support makes all the difference. For those parents of children with Type 1, I just want to say- I have managed to do two degrees, move to another country, marry my husband and have a healthy daughter. Regardless of diabetes. So please don’t focus on the negatives(us Type 1s will always find many!) and take from this that with support and all the new technology we have, life is do-able

@thing47 that is so heart-warming to hear thank you. Our oldest was diagnosed with T1D a few years ago while taking A Levels. To say I was devastated is an understatement and if I could I'd take it from him without question. Unfortunately we have a lot of auto immunity in our family (2 out of 3 of our children). But after I'd got a grip I reminded myself that it could be alot worse.

He has been amazing. Obviously he was very, very upset at diagnosis but he manages it really well and doesn't let it get in his way of university/travelling etc. I am in awe of him and his sensible attitude to it. I think it helps that

a) the hospital team are very good and were very supportive in the early months
b) his background is medical/science so he completely understands T1D from a medical aspect.
c) I used to be a nurse so understood it completely from the start and could support him that way.

When I feel sad about his diagnosis I remind myself it could be worse and unfortunately that's life.

And I almost forgot - d) the technology these days is AMAZING and really helps with management. When I was a student nurse 100 years ago there was no carb counting, libre, dexcom etc just finger pricks a few times a day and suck it up!!!

It's tough to live with,it's a serious condition that impacts hugely on life.
( not for everyone.there will be people who take it in their stride) even when it's well controlled there can be really bad days .
The amount of people that said t me "oh I couldn't live without chocolate"
As if the worst thing about it all is cutting out sweets. Which isn't even factual 🤷‍♂️it's not all about sweets and cakes .

My best guess would be no it isn't! All the monitoring and needles and insulin and stuff.

I can understand the desire from some to not have type 1 and type 2 put together. But would worry T1 would lose on funding and research because such an increase in T2. But maybe T1 needs its profile raised. There are no easy answers. Just hope medical research can ease things for diabetics in the next few years.

For those parents of children with Type 1, I just want to say- I have managed to do two degrees, move to another country, marry my husband and have a healthy daughter. Regardless of diabetes. So please don’t focus on the negatives(us Type 1s will always find many!) and take from this that with support and all the new technology we have, life is do-able

Fist bump as a fellow diabetic - I also have 2 degrees, moved internationally twice, and got married to someone I love very much.

However, diabetes has prevented me from having a successful pregnancy due to a serious diabetes complication and shit luck (that I don't want to discuss further, as it is all rather painful).

Yes plenty of diabetic women have very successful pregnancies but there are some of us who draw a very shitty short straw when it comes to diabetes and pregnancy.

I'm still very thankful for my life and I'm immensely privileged blah blah.

But I do wonder what my children would have been like.

And I wonder if things might have been different had I the technology available now when I was a teenager.

Absolutely not, my dd is type 1 and the effort she has to put in just to stay alive every day is incredible.
It is relentless and heartbreaking to watch.
She has a pump and Dexcom which has made her life easier but certainly not easy.
I wish type 1 and type 2 were called two completely different things as they are two completely different illness and it really pisses me off when someone tells me that their granny's cat reversed their diabetes and advise me on how my dd can do it also. She can't, at present it is incurable and a bloody awful disease

"do-able". True. But more difficult. I think people underestimate what a shit-of-a-disease it is. Yes it's not terminal, not excruciating pain, but daily invasiveness, relentless no break, it's up there with the best of medical conditions.

Comparisons? Which other (non terminal) medical conditions are shittier? Parkinson's. Fibromyalgia.

@Oblomov23 In terms of physical pain I have a frozen shoulder which several doctors have said is likely due to my diabetes. Women with long duration T1 frequently get them, apparently diabetes causes calcification in whatever tissue it is, I forget (maybe ligament?).

It's ok now but it was pretty darn excruciating for a long time!

People get it so wrong. It would be nice to catch a break rather than be kicked from both sides of life’s external factors, even on top of the day to day relentlessness. The powers that be both think it’s the worst thing possible when it relates to something you want to do (so therefore you can’t do xyz job, or enjoy xyz activity) whilst also not disabled enough to get any help when that would benefit you. Parents could get DLA when I was a kid but now an adult I get no help. Don’t know why as now I’m dealing with the lack of sleep in case I have a hypo and the aftermath of the nighttime hypo in one and having to drag my arse in to work feeling like death warmed up.

I’ve recently got to the realisation there’s quite a high chance I won’t get to pension age (still well over 30 yrs away, been T1D for 25), and that’s currently making me lose all motivation for life as I’m surrounded by people enjoying active retirements or at least partial retirements and part time work. Also so many things were ruined for me as a child because I was T1D that limited how other things were treated which were not as optimal as if I was ‘normal’ because it was deemed less risk to do things non-surgically or without anaesthetic.

Don’t get me wrong for T1D I’m very lucky. Most days I can achieve a lot, I’ve represented my country at sport, I’m still very active and compete in a few sports at club level, I hold down a full time job and as yet have no major complications though of course it doesn’t mean none are brewing. I’ve had no major lows needing assistance, no DKA and no hospital admissions in 25yrs, but despite all the new guidelines I’m still fighting for a CGM!!

Basically OP I feel your pain and it’s shit!

I agree Op. I had a frozen shoulder, didn't hurt on a day to day basis, just couldn't lift it. But it was operated in by the best frozen shoulder surgeon Gupta. He said to me that I should've been sent to him a long time ago, and he also said that he operates on more type one diabetics because they never heal, and they need frozen shoulder operations more than anybody else.

I’ve had type 1 since my late teens, and yeah it’s shit. For me it’s just the constant mental load of it all. Can’t just leave the house without checking I’ve got everything, can’t travel without wondering if you’re going to get a security agent who understands why you can’t go through the scanner or one that means you’re going to need to make a scene etc etc. I’m a really organised, borderline neurotic person who worries and plans everything to the extreme, I have no doubt this is due to my diabetes.

That said, although it may make everything harder it doesn’t have to be as limiting as it seems. I am amazed by the leaps in treatment technology over the past decade which do take some (certainly not all) of the load.

I’ve always ran long distance and it’s a pain to manage my diabetes, but I can’t tell you how much easier it is now I have a pump and a Dexcom. I’m in my 40s now and running better than I ever have! I’m not saying this to dismiss the absolute relentlessness of this disease, but I do think it’s important to talk about all the realities, particularly for those who are newly diagnosed or caring for your T1Ds. It’s crap, but it’s not the end!

I’m also really encouraged by the prospect of a cure in the coming years. Probably not for those who are already diabetic, but I can see it being eradicated for future generations.

I seem to have written an essay here, but I also wanted to say that I really don’t think the T1 vs T2, which is worse language is particularly helpful to anyone. They’re both serious, are very different and everyone is on their own journey with their own context. Surely the battle is about increasing awareness and sharing facts, not fighting where on scale of ‘shot’ we all sit.

Imagine comparing T1 to Fibromyalgia 😂😂😂

I presume you don’t have T1

Eh?
I do. Have T1.

I couldn't think of any diseases to compare diabetes to. Lifelong conditions that are invasive. Yes of course there are plenty that cause daily pain. Sorry if my choice of .... Parkinson's. And Fibromyalgia. Wasn't a good choice.

I don't see that there'll be a cure. In fact I'd bet a lot of money on there not being a cure. All the Consultants promised me there'd be a cure in the next 10 years. They said. That was 45 years ago.

My DH was originally diagnosed as T2, 9 years ago, was told to reduce cals and carbs, nothing worked, serious amount of medication and weighing up exercise and insulin.
He is officially now T1 so less meds a lot more carb counting.
It is all he thinks about most the time, not to mention nerve damage, tiredness, mental fatigue.
I don’t wish it on anyone.

Interesting @Oblomov23 my DH has had 3 shoulder ops, all for frozen shoulder or issues concerning it.

@WinchSparkle80 there isn't an 'official' change from type 1 to type 2.

what you mean is he now needs to take insulin. Type 2s do not take insulin for the same reason as type 1s.

There is LADA (latent autoimmune diabetes in adults) which is often misdiagnosed as Type 2 and is becoming more common - I'm guessing @WinchSparkle80 means that?

Those people often have a really tough ride for years to proper diagnosis, becoming more and more unwell.

My dh is T1. He was very lax at managing it until he almost died last year from DKA. Luckily I got him an ambulance in time. But like an earlier PP said, I also thought he was snoring but was in a coma.

Hes much much better now and using his libre2 constantly and also managing it better rather than just leaving it.

I agree. From what I have seen of my friend coping with it , it is up there with the toughest. I have Myasthenia Gravis which can be truly awful (i am bed bound right now, and we live with the very real risk of a crisis and time on a ventilator), but on the other hand with the right treatments we can have time where it's impact is more minimal and there is even the possibility of chunks of time in remission. The relentlessness of life with diabetes is truly tough I think

I was chatting on another thread about the mismatch between the huge outpouring of sympathy for (even a v early stage) cancer diagnosis Vs the lack of support people get when diagnosed with other conditions. Diabetes is up there I think in those where people don't get anywhere near the understanding or support they should.

(My story was of telling friends in a group chat about my Myasthenia diagnosis and someone jumped in and said they had been diagnosed with pre cancerous cervical cells and they got a huge outpouring of sympathy and I'm not going to lie I found it not just hurtful but illogical -i'd had that same diagnosis in the past btw)