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.

I do think that some people think of it as a minor condition. I'm aware that it's a horrible illness that can be life-threatening and have long term serious consequences though. I think that there are loads of diseases that people do not understand and diabetes is one of them.

I'm so sorry for your friend, and for your loss.

Really though, I'd question if it is actually accurate to say she purposefully "neglected herself" in her teens.

I mean, that puts so much blame on her inadvertently. Is that really an accurate assessment of what happened?

Or is it more likely she was a teen with inadequate support (medical, emotional, or social or a combination) trying to manage a serious disease, becoming overwhelmed and burying her head in the sand?

Hyperglycemia affects how your mood and how you make decisions. For so long adolescents were left to sink or swim and then told it was all their own fault. It makes me so sad.

Again, I am so sorry your friend died.

It is a complex condition, best wishes to all posters who have this. I taught at the RNIB Commerial Training College in the late 80's and had many students with sight loss due to diabetes, it's a very difficult condition to manage. I remember one poor girl having to have more toes amputated during the course - she was only 19.

It's b*dy hard work being a type 1. DH Type 1 for nearly 50 years. Diagnosed at 4. It's mentally and physically taxing, yes the new tech helps but when it goes wrong it's a nightmare. He's just got a new system closed loop after years just a pump, dam thing failed tonight que 2 hours of reseting and sorting out as I planned how to get tomorrow off if he needed to see his team. He's sight impaired due to the bugger and so now can't drive . And yes he's well controlled and not over weight never had been. I really feel type 1s are very misunderstood!

Awful disease to have. You are never free of it.

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

No, of course not. It’s the sort of language she used herself but she was entirely as you describe and it wasn’t meant as blame on her at all. She deliberately stopped taking her insulin because she wanted to be ‘normal’ - teenage behaviour being what it is, and not normally having such severe consequences. Unfortunately it caused permanent damage to her, as much as she regretted it after that. Having a childhood so medicalised must be incredibly tough and you can understand why it would become the centre of teenage rebellion.

@lljkk I am possibly being thick here but what is your logic for saying Type 1 is easier than Type 2?

I am well aware of all the super impressive T1D athletes. It's great for them, honestly, but there's plenty of us who are not athletes!

The majority of T1D athletes I can think of are men from fairly privileged backgrounds who had access to all the latest tech before a lot of others. Easier without the shenanigans of a luteal phase to factor in.

Also 🙄

It's awful,OP. My boy is 3 years in. I hate it. Most people assume you take some insulin and Bob's your uncle. I hate it when people waffle on about poor management, like it's easy and entirely predictable 🥴

Sorry, I missed a crucial word out there. She stopped taking her insulin properly. Not totally, but would frequently skip jabs, stopped counting the way she knew she should - basically took risks she knew she was taking. Like I said, she profoundly regretted it not very long after. I felt so awful for her as she was so young when it all happened and it was no different in nature to other sorts of risky behaviour we mostly get away with in our teens.

@lljkk how can T1 be easier than T2? What is your experience of either?
My dd has got T1 and as she says it is hard to live and keep going when your body is trying to kill you every day

DH (47) has been T1 since he was 9 months old so he doesn't know any different. I can see how it has shaped aspects of his personality though, and this I think can often be overlooked.

For example, he's very cautious and not at all spontaneous - how can you be when you need all your equipment and knowledge that food is available? He also won't travel anywhere remote incase of medical emergency.

I totally understand this but wonder if he'd be different had he not been T1...

@lljkk , T1 is absolutely not easier than T2!

my DH is T2 but is on insulin. He was on basal and bolus insulin for 18 months and it was so tiring and scary, and that was with a Libre (which we had to self fund) to help monitor his levels (he’d been diagnosed 18 years earlier but developed DKA so was put on insulin after that). It just felt like every day was different and we just couldn’t predict at all when the hypos would strike. Our sleep was frequently disrupted by his low blood sugar alarm going off. It was just a horrible time.

luckily for him, after a whole load of extra tests following the DKA incident he was prescribed Trulicity and has been able to drop the bolus (for now).

I really feel for those of you with T1 or with T1s in the family. I don’t think many people do understand it though.

It's most definitely not an 'easy' condition. My DH has had it since he was 9 (he's 53 now). It's a roller coaster. His blood sugar is, on paper, excellently under control (in that his HBA1c is very good and has been stable/slightly declining for years), but he goes through phases where it's up and down all over the place, for no apparent reason, and it is SO frustrating for him. It really gets him down.
It's better now he has a CGM (had to fight to get it on prescription, after self-funding for a couple of years), and he's trying to get a pump, but that's a long process.

It's tough on close family too. It's something I have to live with, as it's a constant source of worry. I don't sleep well, as I know I'm subconsciously on alert for a hypo (even though he hasn't had a hypo in the night for years), I worry about him (even though he spots signs of hypos when he's awake, so it's very unlikely that anything bad will happen), and I worry about the future. It's nothing compared to what he has to deal with, but I still find it challenging at times.

The biggest frustration is how misunderstood T1 is. People just think Diabetes is linked with being overweight/a bad diet/being unhealthy etc, and it's nothing of the sort. Can't see that changing any time soon, with rates of T2 increasing.

Absolutely not easy. Bizarrely I know 2 people who were diagnosed with type 1 when they were very very little, one was the youngest in this part of the country to be diagnosed and almost lost their life to it as they couldn’t work it out and didn’t consider diabetes for a long time. The other was only a few months older than the first one I know.
A huge responsibility during teen years too, hard to balance fun treats with taking care of yourself, not giving in to peer pressure to eat things and managing things like sleepovers especially when in that growing phase and your body metabolising the insulin is even more unpredictable (not sure metabolising is the right word here!).
They are both in their 20’s now and it’s still not easy.

I'm t1. 31 years and 94 days diagnosed. It is utterly shit. I dislike when non diabetics give so-called helpful advice. It's very lonely. Nobody understands except other fellow t1 diabetics. And I'll put it out there that t1 women have it harder than our fellow men t1 diabetics as we have a monthly cycle to contend with on top of everything else which, in my experience, means every day different for insulin resistance, and that's before other factors such as stress, tiredness, exercise, food choices, etc etc etc are factored in.

No - it's a huge huge deal. My two siblings have had it since childhood, so I've been aware of the nature of it for a long time, and it's always at the back of my mind if any of my children is even slightly unwell. The child of my very close friend actually was diagnosed with it a few years ago, so I've been getting another glimpse of the incredible level of effort it takes to keep T1D under control. She's got a dexcom and a pump, so basically the best equipment you can get, and her parents still have to be on top of it absolutely constantly.

I think that people know its a fairly labour intensive disease but when you see threads on here where people comment 'they need to be in better control of their hypos' you realise that people do not have a clue just how many things can change blood glucose and resulting insulin requirements throughout the day. They do not understand that even with all the amazing tech available, everything has to be triple checked because one malfunctioning uncalibrated monitor and the difference is life and death. They do not understand the life long issues that result from a relatively short period of higher than preferable HbA1c.

I'm thankful I do not have diabetes but I work in acute care and see far too often the poor outcomes. The 20y old who wanted to try cannabis but it made her vomit for a few days which put her in to DKA. The 35yo on dialysis, blind and wheelchair bound because when he was 19 he achieved his dream of becoming a DJ but the late nights, drinking, party lifestyle meant that it was harder for him to keep his glucose control where it should be. The 30 year old struggling with addiction who decided he didn't want to be on methadone so cut his dose putting his body into withdrawal-another DKA. The 60 year old whose wife didn't wake him because she thought he was snoring but he was in a hypoglycemia coma.
I am always so impressed by T1DM patients, they are 99% of the time so on it with their regime and the knowledge they have of their condition is far superior of any other patient group. I actually feel pretty sorry for patients with T2DM requiring insulin because they often are elderly and really struggle to manage it independently.

I really believe there is hope though. I'm following the ELSA study and will get my kids tested when eligible. If they are able to discover which kids are at risk they can be monitored and begin insulin therapy prior to them going into DKA (which most kids are diagnosed in) and also potentially take part in trials to attempt to delay or stop the onset of diabetes. I really have hope that by the end of my lifetime they will have found something to stop the autoimmune destruction of the beta cells. This sadly won't mean a cure for those in the midst but hopefully a cure for the next generation.

No my father is an insulin dependant diabetic and I see how much work it is. It sounds like an absolute pain in the arse

Not easy at all. Apparently your life expectancy is greater if you contract HIV than being a Type 1 diabetic

Of course not, for many it’s fatal. As is T2DM.

I see a lot of nasty judgment toward people with type 2, including from people with type 1 who clearly have zero idea of the complex aetiology of type 2. So yes, there’s a very high level of ignorance around diabetes, including amongst many who have it.

Absolutely not OP, I can't even imagine the toll it must take, the sheer relentlessness.

My son has anaphylactic food allergies and they're often the butt of the joke too, especially in cartoons and kid's movies. Oh look, someone threw a peanut at her and now her face is swollen and she can't breathe. Hilarious.
People need to educate themselves and find some compassion.

I hope you're doing OK x

I developed type 1 during my first pregnancy at 40. I don't think it's that big a deal most of the time. I monitor my blood sugar levels several times a day but carry on pretty much as normal. My second pregnancy was tricky as I could not recognise an oncoming hypo and ended up in a coma once. But since then I can feel it and address it.
I eat a normal diet, exercise etc. I think it's very hard on young kids and teenagers, but one can still become Olympians and even prime minister- though I acknowledge some may have much more difficulty in managing it than others.
It's not 'easy', but for me it hasn't been the devastating disease it is sometimes made out to be. Much harder back when you had your glucose levels measured once a week at the GPs and had to mix up your own insulin with super long needles.

funnily enough I’ve been thinking about posting a really similar thread for months OP. Would also love to have one fucking convo about T1s online without hearing about T2s. I so wish we could change the name of the disease - people hear “diabetes” and think it’s a joke.

I knew a woman through Mumsnet who died a few years ago from a hypo in her sleep. Early 40s. She left behind young children. It still breaks my heart to think about them growing up without their mother.

I hate this disease so much and what makes it so much worse is it is truly the most misunderstood and underestimated disease in the world. The only one that people still think it’s acceptable to use as a punchline. If you tell people you have diabetes it’s a shrug in response, unlike say cancer. And yet some cancers are curable. Diabetes is not.