Does T1 diagnosis grief ever subside?

[WhiskAverse]

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

Hi. I’m type 1 myself, not a parent. Would it help if I said my life feels very normal, I have 2 beautiful kids, an interesting career and it has never stood in the way of me dating, travelling, partying or doing basically anything else I want? I totally understand the mental overwhelm of the (endless) treatments, but it becomes a new normal eventually. I would say within a year I was feeling a lot better (diagnosed early 20s). Xx

Also T1 myself here.
Like the PP I have a full and normal life.
Once in a while I think "I need a day off from diabetes". But otherwise it is just part of life.
You will all adjust.

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.

Type 1 is a relatively common illness and chances are there will be other diagnosed children at his school when he eventually gets there. The treatments have come on rapidly in the 13 years since I was diagnosed - back then it was just finger pricks and injections. Now we have the pump, wireless monitoring, islet cell therapy.

Your child is 4 and in the nicest way possible (and I’m not saying this breezily), he needs you to pull yourself together for him. There is every reason for optimism that he will live a long and healthy life, and there’s a good chance he may even be cured eventually. You’ll eventually learn hacks and develop a kind of sixth sense as to what he needs and how to deal with it.

I know how scary it is at the beginning (I was sent home alone to a flat with a syringe and a phone number after my A&E diagnosis), but I promise you’ll get there. In a year you’ll be in a different headspace.

Thank you so much twisterlollies. That’s so lovely to read. I meant to put in my op I know rationally it doesn’t make life permanently sadder and that ds will still have the same / an amazing life. I know a handful of people with t1 and they haven’t been held back remotely in any way. I’m just drowning in the pain of ‘before and after’.

I've been diabetic since I was 14. I take insulin. Honestly my life is very normal. Very boring!

I had a period in my teens where I resented being diabetic but I grew out of it x

As I've aged I'm 36 sime complications have caught up with me. My eyes are not 100% but the best thing you can do for your daughter is keep her sugar levels steady and healthy.

He will be OK. You will be OK x

thank you, so appreciate your comment. Looking at my DS the past few days he looks so healthy and happy. He doesn’t stop playing and running around and he doesn’t really complain about finger pricks and injections. I work my absolute hardest and hide my sadness from him. I know I - and eventually he - can and will do it. I’m just scared that this feeling will never leave me; of his life before diagnosis x

Yes absolutely, because going from having a healthy child to a diabetic child must be a huge shock - in a way it’s probably worse to be in your shoes than mine, and I’m not underestimating that. But your little boy will need a rock and as his mum that falls to you. It helps me in tough times to remember that as a mother I can’t afford to be permanently sad, that I have to be an example to my children.

Word of advice - do not join any Facebook groups dominated by Americans. I’m not sure why but sadly their outcomes seem much worse than ours and the ‘worst case scenarios’ play out on them far more than I have ever seen in real life.

For context in 13 years I have never once needed A&E or any urgent medical attention. The only side effects I have are background retinopathy which is being well monitored, and my diabetic friend has had background retinopathy for years with no further deterioration. That’s it. I’ve had 2 healthy pregnancies, travelled around Myanmar and Thailand, had endless nights out, and pursued an interesting career.

Thank you ❤️ There will be two other T1 students when he starts school in September and one of the teachers is also T1.
you’re so right about advances. I’m following eledon/ vertex / sana v closely.
being sent home living alone sounds like a lot! Xx

Boring sounds good right now 😅
thanks for your kind message. We’re hyper focused on the best management we can achieve for him. While living life normally as possible x

That’s exactly it. It’s the shift from ‘healthy’ to ‘chronic disease’.
“It helps me in tough times to remember that as a mother I can’t afford to be permanently sad, that I have to be an example to my children.” I’m going to read and reread this in the coming months, it’s really struck a chord so thank you. I am so so honoured to be his rock.
Thanks for advice about US groups, I have spiralled after seeing some bad things on Reddit and have had to ban myself!
thanks for extra context too; I know deep down he’s going to be totally fine. X

I'm the mother of a T1 young adult, diagnosed at 5 years old over 20 years ago. He's been through university, has a great job, la ovely partner, plays lots of sport and is planning to run a marathon next year.

He was so unwell when diagnosed that to start with it was just a massive relief not to have lost him. It took a long time for it to really hit home that this was a life changing thing for all of us (I had a young baby as well) and the grief didn't hit me for several months. When it did, it hit hard for a while and got better with time.

There were times over the years that I felt really sad about the impact that T1 was having on him and/or angry that life was so much more difficult for him than his peers (e.g. when he hit his teens and started wanting to go out to parties/drink alcohol etc). But I always try to remember that things could have been so much worse.

I got lots of online support from Children with Diabetes UK. I know it's not for everyone, and especially if your child is newly diagnosed it can be overwhelming as everyone seems to know so much and be speaking a foreign language, but I was fortunate to meet like minded people, some of whom have become long term friends.

I'm a T1 mum. DD was diagnosed at 3 years old and it broke my heart. It's not easy and yes, you grieve for the time before type 1. I was petrified in the first few months and thought I would never be able to cope with it, but you do. I made my mind up that if I would have allowed her to do something before T1, then I would still let her do it, just with extra care and thought. It can be so overwhelming sometimes, but you manage because you have to. She's almost 20 now, in her second year at uni and absolutely living her best life. I couldn't be more proud of her.

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.

Sounds like he has an amazing life ❤️ I still replay the paramedic sending me home with DS saying she’d run tests and call me three days later, he would have gone into DKA the next day if I hadn’t have pushed back.
think I’ve been running on adrenaline and shock and learning absolutely everything I can about T1 so delayed onset of the grief. It’s sure hitting now. Amazing how our brains shut things down when it’s too much at once.
you’re right, it really could be so much worse x

That’s the thing- we don’t have a choice but to keep going. It’s so lonely talking to other parents who don’t get it and they talk about how exhausted they are…. If only they knew the exhaustion of multiple CGM alarms overnight etc.
sounds like your DD is an amazing young woman x

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.

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.

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.

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.

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

Look at Myles Above T1D on Facebook. His mother journals for him and talks about many of the highs and lows and teaching her son to manage his condition himself.

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/

I’m not sure why but sadly their outcomes seem much worse than ours and the ‘worst case scenarios’ play out on them far more than I have ever seen in real life.

I think that's largely due to the absence of an NHS to provide medication and monitoring.

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.

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.