Page 2 | Does T1 diagnosis grief ever subside?

WhiskAverse · 2026-05-30T20:35:12+00:00

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

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WhiskAverse · 31/05/2026 15:27

Twisterlollies · 30/05/2026 22:42

Truly there is a big difference between type 1 ‘on paper’ and then how most of us live - which is very normal lives. All the stats are outdated as they are based on long term outcomes before the libre/pump and more modern medicine. I truly believe that diabetes will look very different again in 20 years, and there’s every chance your son will again live a large part of his life without diabetes.

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It’s something I thought to myself very early on - the language (chronic autoimmune disease), while technically accurate, sounds so heavy and doesn’t reflect the reality in a way. Thank you; I’m praying for islet cells and tegoprubart for all T1s x

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WhiskAverse · 31/05/2026 15:31

abbey44 · 30/05/2026 23:05

I’m T1 myself, diagnosed 35 years ago, and can completely understand your feelings for your son. It’s a massive thing to take on board for you and your child, and it’s very early days yet, but please remember, you didn’t cause it and there’s nothing you could have done to stop it happening. There have been huge steps forward in diagnosing and treating diabetes, even in the time I’ve had it, and I’ve seen so much progress since my mother was diagnosed fifty years ago too. For your son, it’ll become his norm, he won’t remember life before, and managing it will become as everyday as brushing his teeth. There’ll be ups and downs, no matter how much effort you (and he) put in, that’s just how it is, but he’ll learn and his life will be as full as he wants it to be.

It’s natural to feel overwhelmed at the diagnosis, the technology, the regime, but it will all fall into place and you’ll find that diabetes will become part of your life, not the ruler of it. (It doesn’t mean that you won’t sometimes wish for a holiday from it though…!)

I wish you and your son all the very best.

Thank you. I do spiral thinking I caused it in some unknowable way even though I know it’s 100% not preventable.
Yes, I’m incredibly grateful for the tech. It’s incredible how people used to manage T1 xx

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Original poster

WhiskAverse · 31/05/2026 15:35

tangarine · 30/05/2026 23:15

Goodness me, it's criminal to hear that parents are still being turned away like you were. I was too, the GP sent us away and a few days later DS was in DKA, blue lighted to hospital and they told me afterwards another 24 hours and he would not have made it. I still sometimes feel guilty that I somehow allowed him to get that sick by trusting the GP.

I think part of the grief is also that as well as being a Mum you also become a hospital consultant, nurse, advocate for your child with school, form filler, risk assessment and mitigation officer, carb counting expert, insulin bolusing genius etc - none of these are jobs that you asked for and from one day to the next you have all this weight on your shoulders. Your brain is constantly having to go a hundred miles an hour even if you have been up all night treating hypos/correcting highs. I don't resent it for one moment, and DS and I have a very special relationship because of everything we went through together with his diabetes.

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I actually wrote to the manager of my GP about the missed diagnosis as I thought God forbid another parent is turned away. He said they’re now reviewing with the staff in question. I’m so sorry you had to endure DKA and the ambulance, sounds terrifying. I hope you let go of the guilt.
And yes that’s so true. I sometimes get sad he’s now my ‘patient’ and have to remind myself he’s still the same old DS as before! ❤️

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Namechangee11 · 31/05/2026 15:37

My DD was diagnosed at 3... The grief was overwhelming for about 5 years if I'm honest... I will say, all the advances in treatment have really helped with my feelings... She is 25 now, has a pump and CGM and has forgotten more about T1 than most people have ever known... She doesn't remember a time before she had it, but I know she too went through a stage of mourning because it excluded her from things (it wouldn't be the case now because of advanced technology). I do still worry all the time, I was very worried when she kind of rebelled in her teens and didn't take great care of it but again, having CGM and pumps are world altering for those of us who remember life before them. You will both be fine but yes, I was overwhelmed and couldn't speak about it without crying for so many years... The main thing to do is to remain bright and breezy with your child, like you can easily manage this and be confident. Act as if you are confident and it will come eventually. It's a horrible shock that something so big and so dangerous can just come and turn things upside down so it is ok to feel flattened by it.

Original poster

WhiskAverse · 31/05/2026 15:51

pbdr · 30/05/2026 23:34

My niece was diagnosed with T1DM at age 3. Over the following months the mental health of both of her parents crumbled as they struggled to cope with and come to terms with her diagnosis. A year later things couldn’t have been more different - she was established on her pump and CGM, and her parents were so firmly in their comfort zone managing her diabetes that they make it look almost effortless. They have got to the point where they can glance at a plate of food and pretty accurately estimate the carb content, and then simply put the number into the app and the pump does the rest. My niece lives a totally normal life, enjoying nursery, parties, going out for meals and baking cakes at home. She doesn’t care that she’s diabetic.

Sure, days will come when she will care, but it’s a very different disease than it was even a generation ago. Pumps and CGMs make a level of tight control possible that simply wasn’t until recently, and there is great hope that it will be cured in the coming decades (or at the very least advanced closed loop pump technology providing a technological ‘cure’).

There have been around 10,000 generations of humans so far, and it’s only around the last 4 generations for whom type 1 diabetes has not been a terminal diagnosis. You can reasonably expect your son to have a long and hopefully healthy life, and there is very little his diabetes will stop him from being able to do.

Try not to be too hard on yourself. A period of grief is fine and normal. But out the other side is a happy, full childhood and life for your son to enjoy alongside you. You don’t want to get so lost in grief that you miss all the life that’s happening in the meantime.

Very helpful perspective, and so encouraging. We’re on a HCL pump in a couple of weeks and counting down the days.
Yes, I’m determined not to miss the happiness that is still around the corner.

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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.

Original poster

WhiskAverse · 31/05/2026 16:25

compactmotif · 31/05/2026 10:24

I don't have any personal experience or advice on T1 specifically, but I just wanted to say it's completely natural and normal to have a grief reaction to health news like this. It is part of how your brain processes the information, what it means and its impact - e.g. making sense of the life you imagined for your DS versus how this might change that picture. There is also a lot of practical stuff to get to grips with so it's natural to find that overwhelming right now.

All feelings including pain are transient. Our body can only sustain intense emotions for limited bursts of time which means that even when it feels the pain will never end, it will come in waves of intensity giving you time and respite to rest in between. E.g. you might notice that after crying you feel slightly less bad and slightly calmer because some of the intensity has been released. Focusing on noticing how it peaks and then relents can help with riding it out when it feels unbearable.

It's completely normal to feel how you do and as you gradually process this, the pain you're feeling now will naturally subside. Don't fight it or try to push it away, just let it run its course so those emotions can drain away out of your system. When you feel able to, turn to face the feelings in small doses and you might notice that each time you do that they gradually become less intense. Also take care of yourself while you're feeling this way - all the normal grief advice applies about eating, drinking, resting, being compassionate to yourself, finding time for activities that make you feel good, etc.

There is support for you so please don't feel you have to try and grapple with this all on your own (or that there's anything wrong with you for having a grief reaction to this news). You might have already explored these pages but just sharing here in case it helps to have them to hand.

https://www.diabetes.org.uk/living-with-diabetes/life-with-diabetes/children-and-diabetes/caring-for-a-child

https://breakthrought1d.org.uk/knowledge-support/guide-for-parents/support-for-you/

Honestly, thank you so much for taking the time to send this. I’m going to return to this many times when things feel dark again.
it’s strange- I almost feel more worried about the grief not dissipating than diabetes at the moment!

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Original poster

WhiskAverse · 31/05/2026 16:27

MujeresLibres · 31/05/2026 13:47

I was diagnosed with T1D close to 20 years ago as an adult. I did go through a huge period of mourning for my old life, so I really understand you feeling that way. As PPs have said, being diabetic has changed now, and he would be a good candidate for one of the closed loop pump-and-sensor combos like the Medtronic 780g. It does get easier. Best wishes, OP.

I’m sorry you went through that mourning.

He’s going onto 780G with Simplera in a couple of weeks x

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Larrythecatforpm · 31/05/2026 16:28

Yeah it does, ds was diagnosed at 7 with dka and it took us about 18 months.. now takes it in his stride he loves to quote “im still standing” song after hypos. 😂

Original poster

WhiskAverse · 31/05/2026 16:29

SeaToSki · 30/05/2026 23:44

I have a chronic disease that came upon me suddenly and catastrophically. My Mum said something to me that really resonated. She said that somethings you just have to live alongside. You dont have to fight it, or give in to it, but just live alongside it finding a new balance and normal. Fighting all the time takes so much energy and keeps you in an adrenalin state..which is exhausting. Giving in is not an option if you want to continue to live (or have DS continue to live). So living alongside it has a sort of zen about it. I have imagined up this panther (representing my condition) that stalks along next to me. We look at each other every so often and just keep that distance between us but its like a mutual respect and now companionship. This probably sounds a bit kooky, but it works for me, and maybe you can find a place in your mind that allows you to settle in with this new normal for your family.

sending some hugs

I like this approach! It reminds me of the book Managing A Mammoth which personifies T1 as a mammoth that shrinks and grows

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Original poster

WhiskAverse · 31/05/2026 16:32

Larrythecatforpm · 31/05/2026 16:28

Yeah it does, ds was diagnosed at 7 with dka and it took us about 18 months.. now takes it in his stride he loves to quote “im still standing” song after hypos. 😂

Sorry you had DKA… 18 months as a timeframe I can get my head around!

Perfect song which DS loves already from Sing!

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Original poster

WhiskAverse · 31/05/2026 16:45

Smartiepants79 · 31/05/2026 13:54

My Dd is as diagnosed with quite serious epilepsy at about 12. I do know what you mean. If I think about it too hard or try to hard to imagine the rest of her life then it makes me very sad. She has been so utterly incredible though that it really helps. Having medication that seems to be working helps also.
It will get better, or course it will.
I agree with staying away from internet ‘support’ groups. The epilepsy ones also seemed to only contain the people with the worst possible outcomes! Very depressing.

All the best to you and DD 😊 She sounds amazing.
Totally - I suppose no one logs on just to say they’re having an awesome time!!

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Original poster

WhiskAverse · 31/05/2026 16:50

Namechangee11 · 31/05/2026 15:37

My DD was diagnosed at 3... The grief was overwhelming for about 5 years if I'm honest... I will say, all the advances in treatment have really helped with my feelings... She is 25 now, has a pump and CGM and has forgotten more about T1 than most people have ever known... She doesn't remember a time before she had it, but I know she too went through a stage of mourning because it excluded her from things (it wouldn't be the case now because of advanced technology). I do still worry all the time, I was very worried when she kind of rebelled in her teens and didn't take great care of it but again, having CGM and pumps are world altering for those of us who remember life before them. You will both be fine but yes, I was overwhelmed and couldn't speak about it without crying for so many years... The main thing to do is to remain bright and breezy with your child, like you can easily manage this and be confident. Act as if you are confident and it will come eventually. It's a horrible shock that something so big and so dangerous can just come and turn things upside down so it is ok to feel flattened by it.

I’m sorry for those tough years. I am so afraid this grief will linger for so long. It feels unbearable and like it will crush me…
yes the technology now is just amazing and hopefully continues to get better and better.
I’m always careful to talk about diabetes in a breezy way in front of DS so hopefully he doesn’t see it as the big scary thing DH and I did at the beginning of dx.

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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.

AreBearsCatholic · 31/05/2026 17:16

Three months is very early on. I think once you've done the first holiday, first birthday and first Christmas and it's had time to become a routine part of your life you will be feeling much better about it.

Sio1989 · 31/05/2026 17:29

My daughter was diagnosed at 6years old, nearly two years ago. It was an awful awful time, it took me ages to get my head around it and even had to take time out from work. Fast forwards to now there are days where I'm totally burnt out but on a whole coping much better. She's now bumped and has sensor. Which makes life so much easier.
There is a FB group that's for parents with type one children, this can be so helpful.
There is also a local charity which runs just type one children meet ups and activity days. This is great for kids and parents. You can check (hospital team) to see if there is anything like this local to you?
Honestly it does get easier ❤️

Original poster

WhiskAverse · 31/05/2026 17:58

AreBearsCatholic · 31/05/2026 17:16

Three months is very early on. I think once you've done the first holiday, first birthday and first Christmas and it's had time to become a routine part of your life you will be feeling much better about it.

thanks AreBearsCatholic. We’re going on holiday in three weeks to my favourite place in
the world where we go every year, a really meaningful place to our family and I’m dreading it which makes me feel even sadder. Dreading it because I know it will bring home what’s happened and how different our time there was last summer and will never be the same.

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WhiskAverse · 31/05/2026 18:01

Sio1989 · 31/05/2026 17:29

My daughter was diagnosed at 6years old, nearly two years ago. It was an awful awful time, it took me ages to get my head around it and even had to take time out from work. Fast forwards to now there are days where I'm totally burnt out but on a whole coping much better. She's now bumped and has sensor. Which makes life so much easier.
There is a FB group that's for parents with type one children, this can be so helpful.
There is also a local charity which runs just type one children meet ups and activity days. This is great for kids and parents. You can check (hospital team) to see if there is anything like this local to you?
Honestly it does get easier ❤️

Glad you’re doing better. I really want to connect with local t1 parents. I met the mother of a t1 child in the same class at DS’s nursery the week he was dx and she told me T1 is awful as she “can’t get hammered any more in case something happens” and how she loves sweets and chocolate and now has to “eat it in secret” so her DD doesn’t see…. The first words out of her mouth to me actually were “Just so you know, this is never going to get easier.”

I felt awful.

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tillyfilth · 31/05/2026 18:19

My son's best mate has t1 diabetes. He's awesome. An incredible mtb athlete who you will likely see on your TV one day. Nobody can come close in his age group! He comes for sleepovers, goes on school trips, does all the normal stuff. You would never know from the outside. It's been hard for his parents but they're in the swing of things now. It is just their normal.

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?

Original poster

WhiskAverse · 31/05/2026 18:44

WhiskAverse · 31/05/2026 18:01

Glad you’re doing better. I really want to connect with local t1 parents. I met the mother of a t1 child in the same class at DS’s nursery the week he was dx and she told me T1 is awful as she “can’t get hammered any more in case something happens” and how she loves sweets and chocolate and now has to “eat it in secret” so her DD doesn’t see…. The first words out of her mouth to me actually were “Just so you know, this is never going to get easier.”

I felt awful.

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I should clarify - the thought of not being able to get hammered anymore hadn’t remotely crossed my mind! I don’t really drink at all but even if I did it wouldn’t be the first thing I’d mention to a fellow T1 parent… so I mention her just to say I didn’t resonate with her at all even though we have T1 in common….

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tangarine · 31/05/2026 20:09

Bless you @WhiskAverse. You will find like minded parents. Could the DSN put you in touch with some?

You have reminded me of when my non-smoking parents made friends with another couple through the asthma society when my brother was diagnosed - they had a child about the same age. My parents were shocked when we all went for tea at their house and they were heavy smokers, and said they weren’t going to stop smoking at home just because their child had asthma. The friendship didn’t continue!

AreBearsCatholic · 31/05/2026 20:25

WhiskAverse · 31/05/2026 17:58

thanks AreBearsCatholic. We’re going on holiday in three weeks to my favourite place in
the world where we go every year, a really meaningful place to our family and I’m dreading it which makes me feel even sadder. Dreading it because I know it will bring home what’s happened and how different our time there was last summer and will never be the same.

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I bet when you are there having a lovely time you will realise the many things that haven’t changed at all. I hope you have a good time, all things considered

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WhiskAverse · 31/05/2026 20:31

tangarine · 31/05/2026 20:09

Bless you @WhiskAverse. You will find like minded parents. Could the DSN put you in touch with some?

You have reminded me of when my non-smoking parents made friends with another couple through the asthma society when my brother was diagnosed - they had a child about the same age. My parents were shocked when we all went for tea at their house and they were heavy smokers, and said they weren’t going to stop smoking at home just because their child had asthma. The friendship didn’t continue!

I will definitely ask them.

Oh blimey! Poor child…..

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Original poster

WhiskAverse · 31/05/2026 20:31

AreBearsCatholic · 31/05/2026 20:25

I bet when you are there having a lovely time you will realise the many things that haven’t changed at all. I hope you have a good time, all things considered

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I’m sure you’re right ❤️

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