# PTSD in parents with type 1



## A13926 (Nov 17, 2018)

hi all my son was diagnosed with type 1 five years ago and is doing really well. However I had a break down this year and have been in counselling for some time. I have had high levels of anxiety which went in treated for three years. I am getting better however having read about PTSD I feel that I am showing signs and symptoms of it. I am seeing a doctor this month to discuss it and tweek my medication. Just wondered if anyone else had been diagnosed. The only studies I can find online are Dutch and USA. There doesn’t appear to be much research done on it. Obviously type one can lead to depression and anxiety but what about the parent / career?


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## HOBIE (Nov 17, 2018)

From the age of 3 in 1966 I have been T1. When ever I fill in a form & it asks are you disabled (I could go WILD). 50 odd years & never let it stop me. Good luck.


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## trophywench (Nov 17, 2018)

Confusing thread title - I wrongly assumed to begin with, that this applied to Type 1 diabetics who were themselves parents.

Anyway whoever the diabetic happens to be, the grieving process always needs to take place (since it's fully recognised that being diagnosed with a chronic condition has the same mental effect as bereavement) and it's more easily identifiable in persons diagnosed as adults - therefore the process that I myself needed to go through when I was diagnosed will likely be the same as the parent - and more especially the mums since they will usually be the ones to whom the bulk of the day to day management issues and problem solving fall - of a T1 child.

(It does beg the question though, if the 'child' isn't an adult like I was, when and how does the child grieve?)

Despite the fact the Gov are forever telling us recently that mental health concerns are getting shedloads of extra resources I have to say (and we have various family members with issues of different kinds) proper psychological help and counselling is virtually non existent.

My suggestion to you for your own situation is the read 'The Five Stages of Grief' by Elizabeth Kuebler Ross - and see where you are on that journey - it helps.


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## Sally71 (Nov 17, 2018)

I don't know about PTSD, but after my daughter was diagnosed I thought I was doing ok and just getting on with things, but it took me 6 months before I could cry at all, and then another 6 months after that before I really let it all out properly.  And then I was a total basket case for at least a couple of weeks, in tears all the bloody time, but once I got through that I felt much stronger and able to cope with a lot more stuff without having to check every little thing with the DSN all the time.  We had some counselling, they kept asking did I feel as if I had accepted my daughter's diabetes; my answer was how can I ever do that, her body can no longer sustain itself without medical intervention, she's being kept alive by her pump and by all those little bottles in the fridge, and if you took those away she'd die, how can I ever accept that?  And it also took me a very long time (maybe even 4-5 years) before I completely managed not to panic about every high reading and try to micro-manage things all the time to keep perfect numbers (cos it ain't possible, no matter how hard you try!). We are now just over 6 years in and I think only in the last 6-12 months am I beginning to be able to say that we are now just getting on with our lives and all the diabetes malarkey is finally falling into the background a bit, and isn't the first thing I think about all the time, and I don't get too upset about it if we have a day or two with high numbers and don't know why.  If that's what they mean by acceptance then I guess I'm getting there.

I don't think any of this is PTSD, it just took me a long time to get through the grieving process.  Yes I still get days when I don't want to do any of it any more, and I still sometimes get frustrated when things aren't working, but I think everyone gets that from time to time.  And I'm not even the one with diabetes, I dread to think what it's like for my daughter . I'll ask her if she wants to comment on this thread!


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## trophywench (Nov 17, 2018)

Well exactly, Sally - it took me years too and I still hadn't completely finished dealing with it in 1998 when my dad died, but managed to let go some more after that in 1999.  It was the early noughties before I finally got to grips with it.

It IS bloody harsh that it's only because of some bits of plastic, wires, silicon chips and bottles of manufactured stinky stuff that I can breath in and out, let alone do anything else though yeah - bet if you asked anyone who's known me since I was little that I've always seemed to cope OK - so why IS that do you suppose? - because we just have to sort ourselves out the best we can and carry on carrying on - cos the alternative's unacceptable to us.


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## Sally71 (Nov 18, 2018)

Funnily enough, my mum has been T1 for longer than I've been alive, and I never thought of her as being much different from anyone else; she just had to have injections every day and occasionally would feel a bit poorly and need to eat some biscuits quickly and that was it.  It felt 10 times worse when my daughter was diagnosed!  Probably something to do with the fact that mum also always just got on with it without complaining, and then I had to do everything for my daughter at first and then discovered how complicated it all is.  I'm a classic case of thinking I knew all about diabetes just because my mum had it, and then finding out that I actually didn't know very much at all!

And when I finally did let the tears out for my daughter, I think I was actually also grieving for the second child I never had.  I've always known I wanted to be a mum, and I always wanted two children.  Well it took two years to get my daughter, and when she was finally on the way I decided that as long as she was healthy I wouldn't mind if I didn't have another one, but if I could get one more in before I was 40 that would be great.  Unfortunately that was a lot easier said than done, as I'd managed to have one child completely naturally then obviously everything works, and I couldn't let go of the fact that I really wanted another one.  We tried for at least four years to get another one but didn't succeed, and no matter how much I told myself that it wasn't going to happen and I didn't really want to be having babies in my 40s anyway and be grateful for what I've got, I could never quite shake the deep down feeling of hope that I might still get lucky.  And I was aware that wanting it so badly was quite likely contributing to the problem but I still couldn't let go.

When my daughter was diagnosed I realised that she needed me more than ever and it would have been a terrible time to bring another person into the family, and I think only then did I finally start to let go of the idea, and then when after the grieving came out I at last felt like I was starting to accept the fact that I'll never have another child and that hope went away.  My hubby and I were united in the decision that we didn't want to put ourselves through IVF or any other "artificial" way of getting pregnant, but his whole attitude towards having children was "if it happens it happens, if it doesn't it doesn't".  I really wish I could have thought like that too, but it just didn't work for me


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## Sally71 (Nov 18, 2018)

Sorry, I think I wandered off topic a bit there


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## Charle2911 (Nov 18, 2018)

I know that I am not a parent but here is my opinion anyway,
Diabetes is extremely underrated, many people have the opinion that diabetes is your own fault so you are just going to have to live with it. Another common opinion is that diabetes isn't all that bad, yes I totally agree that being kept alive by a little machine around my waste is not all that bad. I know that things could be worse and I am extremely glad that they are not but how on earth can any one expect me to accept the fact that if you take my pump away I will die? I think that it is perfectly normal to get some kind of mental health issue such PTSD, I think that they should make a new thing called PDDD ( post diabetes diagnosis disorder) mainly because I have never met anyone running around shouting, " I have diabetes I am so happy!" .


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## trophywench (Nov 18, 2018)

Well Sally - this IS the place to be absolutely honest with our peers - so it's 'correct' as far as I'm concerned.

Charlie - 'Diabetes Distress' IS supposed to be 'recognised' by the medical profession nowadays so we've been told - but as some doctors don't even recognise straightforward distress eg when their normally coherent patient bursts into tears and sobs - and they just stare at the wall until after the patient has walked across the office, helped herself to a piece of his blueroll by his sink, and wiped all the snot off her face, before saying another word or passing her a tissue - how the hell can ANYONE expect them to recognise DD?

@A13926 - just a late thought about this, for you - because I personally have had really good MH support from my DSN at the hospital D clinic I attend - have you broached the subject with your son's clinic DSN?  They are supposed to offer psychological support there for the kids under their care, hence they may be able to signpost YOU to the help you need even if they can't personally do it.  You are - after all - absolutely central to your child's well-being.


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## A13926 (Nov 19, 2018)

trophywench said:


> Well Sally - this IS the place to be absolutely honest with our peers - so it's 'correct' as far as I'm concerned.
> 
> Charlie - 'Diabetes Distress' IS supposed to be 'recognised' by the medical profession nowadays so we've been told - but as some doctors don't even recognise straightforward distress eg when their normally coherent patient bursts into tears and sobs - and they just stare at the wall until after the patient has walked across the office, helped herself to a piece of his blueroll by his sink, and wiped all the snot off her face, before saying another word or passing her a tissue - how the hell can ANYONE expect them to recognise DD?
> 
> @A13926 - just a late thought about this, for you - because I personally have had really good MH support from my DSN at the hospital D clinic I attend - have you broached the subject with your son's clinic DSN?  They are supposed to offer psychological support there for the kids under their care, hence they may be able to signpost YOU to the help you need even if they can't personally do it.  You are - after all - absolutely central to your child's well-being.



I am working through it. I have a good welfare system at work. After four years it’s only starting to become clear that my MH issues are mainly due to sons diagnosis. His health and his HBA1C is fantastic but it’s certainly taken it’s toll. However I am an emergency service worker and there is a lot of assumption that the issues I have are due to the work that I do and what I have seen. I am sure that is part of it. It’s so difficult to explain to people unless they have been there


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## SB2015 (Nov 19, 2018)

Charle2911 said:


> I know that I am not a parent but here is my opinion anyway,
> Diabetes is extremely underrated, many people have the opinion that diabetes is your own fault so you are just going to have to live with it. Another common opinion is that diabetes isn't all that bad, yes I totally agree that being kept alive by a little machine around my waste is not all that bad. I know that things could be worse and I am extremely glad that they are not but how on earth can any one expect me to accept the fact that if you take my pump away I will die? I think that it is perfectly normal to get some kind of mental health issue such PTSD, I think that they should make a new thing called PDDD ( post diabetes diagnosis disorder) mainly because I have never met anyone running around shouting, " I have diabetes I am so happy!" .


Thanks Charlie
A good description of what it is like.


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## SB2015 (Nov 19, 2018)

Sally71 said:


> Funnily enough, my mum has been T1 for longer than I've been alive, and I never thought of her as being much different from anyone else; she just had to have injections every day and occasionally would feel a bit poorly and need to eat some biscuits quickly and that was it.  It felt 10 times worse when my daughter was diagnosed!  Probably something to do with the fact that mum also always just got on with it without complaining, and then I had to do everything for my daughter at first and then discovered how complicated it all is.  I'm a classic case of thinking I knew all about diabetes just because my mum had it, and then finding out that I actually didn't know very much at all!
> 
> And when I finally did let the tears out for my daughter, I think I was actually also grieving for the second child I never had.  I've always known I wanted to be a mum, and I always wanted two children.  Well it took two years to get my daughter, and when she was finally on the way I decided that as long as she was healthy I wouldn't mind if I didn't have another one, but if I could get one more in before I was 40 that would be great.  Unfortunately that was a lot easier said than done, as I'd managed to have one child completely naturally then obviously everything works, and I couldn't let go of the fact that I really wanted another one.  We tried for at least four years to get another one but didn't succeed, and no matter how much I told myself that it wasn't going to happen and I didn't really want to be having babies in my 40s anyway and be grateful for what I've got, I could never quite shake the deep down feeling of hope that I might still get lucky.  And I was aware that wanting it so badly was quite likely contributing to the problem but I still couldn't let go.
> 
> When my daughter was diagnosed I realised that she needed me more than ever and it would have been a terrible time to bring another person into the family, and I think only then did I finally start to let go of the idea, and then when after the grieving came out I at last felt like I was starting to accept the fact that I'll never have another child and that hope went away.  My hubby and I were united in the decision that we didn't want to put ourselves through IVF or any other "artificial" way of getting pregnant, but his whole attitude towards having children was "if it happens it happens, if it doesn't it doesn't".  I really wish I could have thought like that too, but it just didn't work for me


Charlie was fortunate to have such a good Mum, and the support that she has had from you has obviously worked.  Well done.


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## mikeyB (Nov 19, 2018)

I haven’t the slightest doubt that anxiety, and even depressive symptoms can occur after the diagnosis of Diabetes in a child, but that is far from being PTSD. It’s a very specific diagnosis, with a specific collection of symptoms. 

Just a thought about the title of the thread, really, not the content, for sure.


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## PhoebeC (Nov 20, 2018)

Sally71 said:


> And when I finally did let the tears out for my daughter, I think I was actually also grieving for the second child I never had.  I've always known I wanted to be a mum, and I always wanted two children.  Well it took two years to get my daughter, and when she was finally on the way I decided that as long as she was healthy I wouldn't mind if I didn't have another one, but if I could get one more in before I was 40 that would be great.  Unfortunately that was a lot easier said than done, as I'd managed to have one child completely naturally then obviously everything works, and I couldn't let go of the fact that I really wanted another one.  We tried for at least four years to get another one but didn't succeed, and no matter how much I told myself that it wasn't going to happen and I didn't really want to be having babies in my 40s anyway and be grateful for what I've got, I could never quite shake the deep down feeling of hope that I might still get lucky.  And I was aware that wanting it so badly was quite likely contributing to the problem but I still couldn't let go.
> 
> When my daughter was diagnosed I realised that she needed me more than ever and it would have been a terrible time to bring another person into the family, and I think only then did I finally start to let go of the idea, and then when after the grieving came out I at last felt like I was starting to accept the fact that I'll never have another child and that hope went away.  My hubby and I were united in the decision that we didn't want to put ourselves through IVF or any other "artificial" way of getting pregnant, but his whole attitude towards having children was "if it happens it happens, if it doesn't it doesn't".  I really wish I could have thought like that too, but it just didn't work for me



Although I'm the T1 I completely get your point on wanting a second child. I would love to be able to have another, but I know that the impact to my daughter and OH and myself of another pregnancy is not worth it. I could allow it to upset me, and I have felt at times heartbroken but I have learnt it is not worth the engry. I completely understand this feeling though. Also way off the original subject, sorry.


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## julia colebatch (Jan 7, 2019)

My son was 19 months old when diagnosed that was 20 years ago this week, he had been ill for some time and I kept pushing the doctor, it was only after I refused to leave the GP office that he did a finger prick, no diabetic in our family’s history, I had mentioned that my son had started  begging for his cup for water from the tap , anyway we were rushed straight to hospital his reading was off the scale he needed insulin fast . It was a roller coaster, we had fantastic support from doctors nurses the whole team, I ran in adrenaline for months, then I lost weight I was eating but the weight fell off me, I was like a skeleton, the doctor said it was shock , if we had bad episodes which we did at the start trying to control a toddler with type 1 is not easy, I always coped at the time dealt with hypo sat by his bed when a coma shut his body down.,it was always after I had extreme symptoms of exhaustion anxiety and crying. I don’t know if it was PTSD but it certainly wasn’t nice, we are struggling to keep our child alive every single day, so something has to give somewhere


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