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Original poster

Does T1 diagnosis grief ever subside?

58 replies

WhiskAverse · 30/05/2026 21:35

Hi everyone,
I’m desperately hoping for some reassurance and positive stories- specifically regarding the grief of T1D diagnosis. My 4yo DS was dx three months ago.

I’ve searched and read so many MN threads, feels like all of them. As well as FB and Reddit. Just looking for some semblance of hope that the grief will eventually start to subside at some point? I am struggling to function.

I currently feel like the pain is eating me alive; that life is permanently greyer and sadder; that I don’t know how to go on.

He’ll be on a pump soon. We’re at about 80% TIR currently on MDI. He’s his usual happy self but I am consumed with the grief.

thank you in advance

OP posts:
Original poster
WhiskAverse · 31/05/2026 20:35

Sio1989 · 31/05/2026 18:22

Honestly it does get better. There are days where we are rocking it and everything even highs and lows aren't a bother, and then there are days where nothing works right at all and I just want to scream and cry. My daughter is good, good at knowing her body but that has came over a couple of months of her learning too. Every so often she says, why isn't she normal... who is these days.
As for sweet and chocolate. I dont say no, unless she's had too much already (as I would of done before T1). Only thing I do say is, can we not do sweets as I find then very hard to carb... her response is "ah you'll work it out" kids!! My daughter is active which works out great, we are 80-85% in range.. the are some weeks where we have had bump fails or a party which sends things all over. I should listen to my own advice, but dont get so hung up in %s, their HB1C will get checked every 3months so that'll see how things are truly going.
As for alcohol... one or two glasses, I'm fine but if your wanting more then yes, a sleep over is needed!
I'm in the North East, if your anywhere close?

Thank you 🙏 Wow great TIR. You’re so right about there being no true ‘normal’

Ah I’m South east unfortunately x

OP posts:
Original poster
WhiskAverse · 31/05/2026 20:47

bearfood · 31/05/2026 16:01

My DS was 3 months away from his 18th birthday when diagnosed, in the summer holiday between year 12 and 13. His sight was (temporarily) affected, meaning he had to cancel his driving test, his 18th celebrations were nothing like he had envisaged and the week long stay in hospital replaced the festival he had planned with mates. Then, the final year of school where he was just expected to get on with it and pass his A Levels like nothing had happened.
I kid you not, I aged visibly that year. I felt panicky and just devastated for him and everything he had worked for and planned. I became obsessive checking his levels on my phone, couldn’t sleep if he wasn’t home especially if he was driving. He broke up with his girlfriend, lost interest in school, passed his A Levels decently but in no way at his full potential. Decided to defer uni, took a crappy job he didn’t care about, life seemed altered from what we knew.
Fast forward 6 years. He is going to be a dad soon (with the same girl he broke up with for a while), works in a job he loves and his sugars are more in range than out. And I just don’t worry! He knows what he’s doing, I still have his readings on my phone but I rarely look at them (I do check after an alert though that they’ve gone back to normal).
Having said all that, I cannot imagine doing this for or with a 4 year old. I take my hat off to you and anyone else who deals with T1 in small children. If you are on Facebook look up Diabetic Diamond, she has three children under 10 all with T1 and copes marvellously.

Wow. Your DS sounds like a testament to you! Such an inspiring story, thank you.
there are things about DS’s age that make T1 difficult yes, but partly I’m relieved that he won’t remember life before dx. I know he’ll more than likely have burnout / teenage rebellion but if I can shoulder this real ‘grieving for the old life’ part so he doesn’t have to then I am more than happy to.

OP posts:
Original poster
WhiskAverse · 31/05/2026 20:50

namechange62 · 31/05/2026 17:05

I'm so sorry that you are going through this but let me tell you my experience please.
I started paediatric nursing in 1981. And I nursed very poorly children and was there when their parents were told the devastating diagnosis.. I sat in on the appointment when the parents of girls were told conceiving, pregnancy and childbirth could be very dangerous for their child. It was very difficult getting finger pricks because it was a small scalpel which was scary for the child. And test strips and blood everywhere sometimes. And complicated algorithms to ensure correct dosage of insulin.

Fast forward early 90s when I made friends with someone who has 2 healthy pregnancies along side me. She just had extra midwife appointments and had to be more careful with her diet.

Fast forward again to 2016 when my DS met his future wife. She'd taken part in the Dexcom trials and really opened my eyes to how far the treatment of type 1 diabetes has come. She has a device on her arm which tells her what's happening and how much insulin she needs. Amazing..She's had an amazing life, university, travelling in remote areas and is a primary school teacher.
I know you have a DS but my point being by the time your precious boy is an adult who knows what science will have invented!
Remember this please.

Edited

This is humbling ❤️ I can only imagine the heartbreak and struggles. Very grateful for your stories and perspective.
I will count my blessings tonight and hold hope for the future. x

OP posts:
Original poster
WhiskAverse · 31/05/2026 20:56

INeedAnotherAlibi · 30/05/2026 22:23

No personal experience. I do have a good friend who is type 1 and she’s travelled all over the world and managed well. She has tried different ways over the years. I know she had a pump at one point that she didn’t like, but that was late 00s. She’s got 3 children as well. She definitely lives a full life.
It may sound quite random, but if may be worth watching last year’s Race across the world. There’s a lad and his girlfriend team. He’s type 1 diabetic with a pump. Of course, the experience had its challenges due to his diabetes, but it doesn’t stop them at all and (no spoilers) but their journey was incredible! Might help you to see how someone can live with type 1 diabetes, even in extreme situations.

Definitely going to watch this! Thanks for the recommendation!

OP posts:
Oblomov26 · 31/05/2026 23:18

Hope OP is doing ok now.
I'm struggling with mine atm. The hospital don't seem that bothered that I'm so high all the time, but it makes me feel so ill. The 780g algorithm is far too conservative for my needs.

Original poster
WhiskAverse · Yesterday 07:14

Reading everyone’s replies is very encouraging.

It’s hard waking up each morning and remembering what’s happened.

I told my husband at the weekend that life feels so painful that it’s not worth it and he said he feels the same which was crushing. We’re talking to a therapist together today as I think we’re both a bit desperate.

Thanks all x

OP posts:
Original poster
WhiskAverse · Yesterday 07:15

Oblomov26 · 31/05/2026 23:18

Hope OP is doing ok now.
I'm struggling with mine atm. The hospital don't seem that bothered that I'm so high all the time, but it makes me feel so ill. The 780g algorithm is far too conservative for my needs.

Sorry to hear this. We chose the 780G for its supposed aggressiveness, sorry it’s not working for you at the moment.

OP posts:
tangarine · Yesterday 08:08

WhiskAverse · Yesterday 07:14

Reading everyone’s replies is very encouraging.

It’s hard waking up each morning and remembering what’s happened.

I told my husband at the weekend that life feels so painful that it’s not worth it and he said he feels the same which was crushing. We’re talking to a therapist together today as I think we’re both a bit desperate.

Thanks all x

I hope your conversation with the therapist goes well. It sounds like you and your husband are a good team.

Things will get better, even if it doesn't feel like it right now.

And I know it is easier said than done. but try not to aim for perfection right now. Especially with little ones there are so many variables: it used to drive me nuts that I'd have carb counted every morsel of food, titrated long and short acting insulin to the half unit (this was pre-pump/pre-CGMS), accounted for hot weather/birthday parties/swimming lessons 24 hours previously or whatever it was that I'd learned by trial and error and meticulous record keeping and DS's sugars were still a law unto themselves.

You are doing a great job looking after your child with a highly complex chronic illness that it notoriously hard to manage and it's not surprising that there is an adjustment period.

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