Adult perceptions of diabetes as a child

[tim2000s]

Reading a couple of topics recently, I find it quite interesting to see the reflection of adult concerns about T1 on to children and how children grow up with the condition. I'm going to start with what is my perspective, but I'd welcome your thoughts as I think it's a very under considered area of discussion.

I was diagnosed at 13. Still relatively young, but not an incapable child. As a result, pretty much from the word go, it was up to me to do what was necessary to blood test, take insulin, etc, with the encouragement of my parents. I think as an older kid, given the right instructions, you tend to just get on with it and not worry about the future. There's a lot of talk about mindfulness and diabetes, and as a kid you have it in bucket loads. You also are much more interested in non-diabetes stuff. Friends, sports, the opposite sex, etc. Many of the concerns that parents have aren't yours. You don't sit there and worry about your future, and I suspect that very few are that worried about low or high blood glucose levels. You just get on with it. You get older living with it and it just fits into your life. Or it should. That's a key part that parents have to play.

It's very different from being diagnosed as an adult. As an adult (or even post 16), you have a life before that you remember. You have gotten used to a life where you are able to drink, eat what you want with aplomb, exercise, and just get on with stuff. As a result it's often much harder for adult onset T1s.

As a youngster, these are mostly not considerations that have crossed your mind yet. Between the ages of about 9 and 14, you are young enough to be dependent on family and old enough to (possibly with guidance) look after yourself, and you are perfectly capable of doing so without dwelling on it.

Parents, however, typically dwell on what your life will be like, what could go wrong now, and tend to pass these fears on to their kids. It's wholly natural to do this, but I'm not sure that many realise that they do this, and what the impact could be.

This may be a completely incorrect perception, but I do wonder whether adult onset T1s consideration of how it affects older children is slightly skewed, and whether parenting and available monitoring has changed such that older children are watched and monitored to such a level that T1 is made much more of a "thing" of.

What are your thoughts?

 

[dancer]

I was diagnosed when I was 24, in my 2nd year of teaching. I also grieved for my pre-diabetes life but was also thankful that my education was complete.

I didn't realise how lucky I was, being diagnosed as an adult, until 20 years later when I did a diploma in special educational needs. I couldn't believe how quickly hypos could creep up on me when I was trying to write an essay!

I have a great admiration for Type 1 youngsters who leave home to go to University, because I know the difficulties they could have.

 

[tim2000s]

I have a great admiration for Type 1 youngsters who leave home to go to University, because I know the difficulties they could have.

But that's my point. I'm not sure how many do have them. Many have grown up getting used to playing sport, drinking, going out, etc, and therefore don't have to learn it. It's really just a part of life! When we do it, it's not like we've never known any other way of dealing with these things. It really is just life!

 

[Snapsy]

I was 11. And I am one who has always worried about everything in the way in which you have described how a parent would worry. I don't really remember how I went about life before I was diagnosed, to be honest, even though I was 11.

Im very struck that the word 'grieve' appears several times in this thread. It sounds drastic, but I find it an appropriate term.

You see, I grieve not for my pre-diabetic life, but for what might have been that hasn't been.
That said, I try to just crack on the best I can!

Fascinating thread, @tim2000s - thank you.

 

[dancer]

But that's my point. I'm not sure how many do have them. Many have grown up getting used to playing sport, drinking, going out, etc, and therefore don't have to learn it. It's really just a part of life! When we do it, it's not like we've never known any other way of dealing with these things. It really is just life!

Is it "just life" and do they all just get on with it? What about the ones who don't always take their insulin, for one reason or another?

I think it's the usual case of "everyone is different". Some people, whether diagnosed as children or adults, just get on with life, while others go through rebellious phases or "burnout".

 

[Juicyj]

I was diagnosed at 38, and as my sister in law said, old enough to know better but young enough to get on with it. In some respects she was right, but it was a right pain the backside and I did grieve for the life i'd had at that point. As a parent I also contemplated the fact that my daughter might be diagnosed, so then it has always made me aware of how life is for children and adjusting to school with it, as well as how it affects them at various ages, also reading parent's posts too and their fears and anxieties about how their children cope with it as well as trying to fit in with others and lead normal lives.

To some degree children are more adaptable to change than adults so handle this far better, but it's definitely parent's fears which are passed on and can influence how well a child can cope.

 

[tim2000s]

I think it's the usual case of "everyone is different". Some people, whether diagnosed as children or adults, just get on with life, while others go through rebellious phases or "burnout".

I think rebellion or burnout is also just part of life. When you get a large collection of T1s in a room together, you rarely find anyone who, at all phases of life, have stuck exactly to what they are told to (based on the 200 or so people at PWDC).

Principally because it's extremely tough to. If there's one thing I'd like to see diabetes care acknowledge its that the majority of T1s go through something like this and that however you look at it, it's a pattern that is just part of life.

Acknowledging it, and saying it's okay, I believe, will help people back on track much more easily.

 

[the_anticarb]

I think it's far, far easier to be diagnosed as an adult. Easier because it's harder. What I mean by that is that as an adult there is far more chance of taking the illness seriously and having the emotional maturity to prioritise it.
I say this from experience as I was diagnosed at age 15, too old to have a lot of interference from parents too young to take on the responsibility myself.
I ended up ignoring my diabetes, getting diabulimia and then many years later suffering complications.
I sometimes wish I could be diagnosed afresh at the age I am now, 39, as I know I would take responsibility from day one which is not something I could do as a teen.

 

[catapillar]

I'm not sure emotional maturity and age are the same thing I was diagnosed at 26 and I still managed to have a good few years deeply in denial, the honeymoon helped, I took my insulin when I was supposed to & sort of guess estimated my bolus but I very rarely tested, I would go a week without testing my blood. And I was busy working and living a life, so it was easy to say I've got better things to do. I had to get up for work in the morning, I hated waking up hypo in a bolt up right panic, so I basically (without thinking about it and certainly without thinking about the consequences of doing it) trained myself out of waking up for hypos by resolutely ignoring them, rolling over and going back to sleep cos I'd have to get up in a few hours and I'll have breakfast then and it'll be fine, right? Yeah, it worked a bit too well...

Even with that in mind, I'm so glad I was diagnosed later. I do feel like I was lucky to get that exemption. I do grieve for the normal, but If I was able to be that stupid when I was supposedly mature can you imagine what damage I'd have done as a teenager? I dread to think.

But that's just me and my, highly questionable, "emotional maturity". I'm sure there are teenagers and children who handle it amazingly well. Maybe the lesson is, as well as we can't really understand anyone else's normal, just that people are different. Whether it's better/worse/harder/easier (I can't think of words to use that doesn't make it sound like a competition to win the worlds worst prize) depends on age, inside leg measurement, whether you were born a Saturday, how many pillows you sleep on etc, etc...

 

[dancer]

You know, the gospel truth is, I don't manage my diabetes for me. Even though I'm not managing well at the minute but I'm only 2 months into diagnosis.I manage it for my daughters. Both of them. I manage it for my 13 year old because I want to be here for her. She's a teenager and life is tough. I want to be here to see her become the wonderful, beautiful, intelligent woman I know she will be.
And I manage my diabetes for my 11 year old girl who is also type 1. I manage it for her so she manages hers. I can't let this thing beat me. She is such a beautiful, bright, care-free & happy girl and I want that to continue.

You have to lead by example, right?

If it was just me and this awful condition I would've given up on day 1.

You're doing it for you too. At times it's hard, but the good things in life make you want to go on. Your girls are your good things in life at the moment but there will be other things you want to enjoy (weddings, grandkids . . .?) Life is something to look forward too - it's just unfortunate that things happen which sometimes make it difficult to remember that. 2 months is nothing, in time you'll realise that things could be an awful lot worse than "just" having diabetes. I must admit, it took me about 2 years to realise that!

 

[steve_p6]

I think it must be a lot harder for kids to ignore it these days with the basal/bolus/pump regimes. My first 12 years from 11 onwards I was just on a single shot of monotard each day and winged it and got on with sport and life. I think though that the unfortunate thing is that the just getting on with it and putting life first then carries on a longtime into adulthood as an ingrained attitude.

 

[c18ppy]

I was 11. And I am one who has always worried about everything in the way in which you have described how a parent would worry. I don't really remember how I went about life before I was diagnosed, to be honest, even though I was 11.

Im very struck that the word 'grieve' appears several times in this thread. It sounds drastic, but I find it an appropriate term.

You see, I grieve not for my pre-diabetic life, but for what might have been that hasn't been.
That said, I try to just crack on the best I can!

Fascinating thread, @tim2000s - thank you.

I was 18 when I found out I was insulin dependant. I was pretty devastated at the time as I played a lot of sport. My biggest problem was being told to keep my GL between 6 12 when normal was 5ish lucky for me my brain took over and I decided to keep my GL between 3 6. I'm 43 now and still very fit I had 15 years as a professional rugby player. When I first started playing rugby professionally I would eat all the time mars bars everything only letting my GL reach 11 before games and training, when rugby first went professional training was twice a week and play on a Saturday, I had a lot of spare time on my hands so I decided to start teacher uni to become a teacher, that was shocking as I needed twice as much sugar in the class using my brain rather than my body on the field it blew me away. I feel for children with diabetes but as long as they except it they deal with it very well, second nature. I also grieve to be as before but until it becomes a possibility I'm going to keep kicking diabetes ass living my life. Sorry if anyoner dads this and gets bored but it's nice talking to people in the same fight cheers Paul

 

[kevinfitzgerald]

My father had Type 1 and I always remember (long before I was diagnosed) watching him do his injection at the kitchen table after boiling his glass and metal syringe. I would see him do this every morning and every evening before supper once he was back from work.

He never complained about it he just got on with it and watching him inject became as much a routine as it was for my mother to always make tea for all at 8pm !

We were also used to watching him when having a hypo (or insulin reaction as they were called back then) and again getting him a sweet drink was just routine.

I was diagnosed as Type 1 in 1981 and I can honestly state that it didn't bother me. I saw it more as an inconvenience than a potentially life threatening illness !

I think if you have Type 1 and your child gets it all you can do is be there and use your own personal experience as a tool to guide and encourage. Also my father led an active life and so I always knew that if I developed diabetes I could lead a normal life without being in fear of it

I have read a lot of posts on here from adults that have Type 1 and whose children have got it. Some say they do not know how to support their children. All you can be is a good role model and be grateful that your child has a greater chance of leading a normal life due to the simple fact their father or mother already have it and can lead by example.

Imagine family that have no experience of the illness whose children get diagnosed. Now that is scary !

 

[Minnie45]

Interesting thread and I must admit sometimes when I read posts from parents of type 1 children, although I do understand their fear and concerns, I do have difficulty understanding things such as claiming PIP/DLA. I'm not saying it's right or wrong, just I don't understand. Here's why, my story. I was diagnosed towards my 7th birthday, some 40 years ago. I had been unwell for a while, ended up seriously unwell with DKA in hospital. Third day of my diagnosis whilst still in hospital I was injecting using thick 1 inch long needles. Blood glucose home testing didn't exist so pee in a pot, add to a test tube, add a fizzy tablet and watch it change colour. Many episodes of serious hypos and hypers as it was difficult to accurately get an idea of what was happening. However life continued with as normal a childhood as possible, I remember I could have been registered as 'disabled' but my parents wouldn't have it, things were difficult for them as until blood glucose testing existed the first any of us realised I was seriously hypo (mainly at night) was when they'd hear me fitting. Thank goodness over the years we've seen many improvements including blood glucose testing, sensors, new insulins and pumps. It's never easy, irrespective of whether you're a child or adult but going from my personal experience I'm extremely grateful to my parents for their love and support, but also for allowing me an as near normal childhood as possible.

 

[Mrsass]

I was diagnosed aged 3 and I always think I've had it better being diagnosed that young than if i was say now (aged 29) I often feel for people that are diagnosed as adults, as others have said they tend to grieve for the life they had, I just grew up with mine as a way of life, I've known no different to bg tests and injections.

I always want to tell the parents that come on here heartbroken about their young child being diagnosed that it's ok, they will be fine, I know not every child will have the same mind frame I did but they really won't know any different so it just becomes routine, and you definitely don't think about any complications at all growing up..

Don't get me wrong I rebelled in my teenage years, think that was just part and parcel of being a teenager, I've never been angry about my diabetes, I just wanted to be a bit more care free like my friends.. But realised in time that just wasn't going to work.

From being diagnosed so young I like to think it made me a more Independant person too

 

[kevinfitzgerald]

I was diagnosed on 28th January 2016. My daughter was diagnosed on 2nd February 2016. I have no idea what I'm doing in regards to mine or her diabetes. But we're getting there slowly; together.

Blimey thats a bit of a double whammy (never quite understood that saying!) Not sure how old your daughter is but you could probably make managing your levels as some kind of competition or something along those lines as you get to grips with things and you can learn together.

As said I do not know your situation but stay close here and learn all you can as you obviously are already doing..

I sincerely wish you both the very best. It will get easier, you may not think so but it does and it will..

Kev

 

[SteveOsborne]

I was diagnosed on 28th January 2016. My daughter was diagnosed on 2nd February 2016. I have no idea what I'm doing in regards to mine or her diabetes. But we're getting there slowly; together.

Hi @mahola I was diagnosed back in Feb 2014 and my son who is now 3 in June 2014 (15months at the time) it can be done. I found myself going through dark patches sometimes but you look at your loved ones and realise. My son is now just starting to jab himself under our supervision as he still doesn't understand the numbers yet.

Chin up and if you ever need to talk get in touch.

Steve

My father had Type 1 and I always remember (long before I was diagnosed) watching him do his injection at the kitchen table after boiling his glass and metal syringe. I would see him do this every morning and every evening before supper once he was back from work.

He never complained about it he just got on with it and watching him inject became as much a routine as it was for my mother to always make tea for all at 8pm !

We were also used to watching him when having a hypo (or insulin reaction as they were called back then) and again getting him a sweet drink was just routine.

I was diagnosed as Type 1 in 1981 and I can honestly state that it didn't bother me. I saw it more as an inconvenience than a potentially life threatening illness !

I think if you have Type 1 and your child gets it all you can do is be there and use your own personal experience as a tool to guide and encourage. Also my father led an active life and so I always knew that if I developed diabetes I could lead a normal life without being in fear of it

I have read a lot of posts on here from adults that have Type 1 and whose children have got it. Some say they do not know how to support their children. All you can be is a good role model and be grateful that your child has a greater chance of leading a normal life due to the simple fact their father or mother already have it and can lead by example.

Imagine family that have no experience of the illness whose children get diagnosed. Now that is scary !

 

[kevinfitzgerald]

We are having lots of laughs along the way. Can't make everything serious can you?!

For example, she thinks it's hilarious to tell me she's having a hypo because it scares me so much. She laughs about it because it makes me pull a funny face. (Out of sheer panic!)

And we often sit looking at pictures of pancreas' on Google images because she finds it hilarious that it's a similar shape to a "willy"

Ok, I'm childish and she is 11

Haha, perfect attitude to have. Learn together and have fun. You said you can't make everything serious and I agree. Let the diabetes be part of your lives and not the other way around. Learn, accept it and enjoy the rest of your lives.. I've been Type 1 for over 34 years and ranted it has been difficult at times but I ma still very much alive and kicking as are many other s on here !

Good job it doesn't look like a kidney eh !

 

[the_anticarb]

For me the very worst thing about being diagnosed young rather than as an adult was that I'd had just enough time for the complications to begin to set in (I'll admit I was poorly controlled for most of the younger years) by the time I wanted to start a family. I had massive eye problems and very nearly couldn't have a second child - it was a massive risk but luckily everything turned out ok. So now whenever I hear of a woman being diagnosed as an adult, I think well at least if you do get complications it will be after your child bearing years (usually)