Diabetes type 1 (young people)
Support from parents and families
Having a child or teenager diagnosed with Type 1 diabetes has an impact on the whole family, brothers, sisters, grandparents, and most of all on parents. It doesn't necessarily mean that diabetes changes the way family members feel about each other, but it can affect family routines and can at times make everyone more tense and emotional. Here young people talk about how their families responded to their diabetes, and how it took time for some families to learn to cope without 'stressing out'.
Lewis describes his diagnosis as a ‘shock’ for everyone and feels that managing diabetes is an ongoing ‘team’ effort.
Mother: We’re still learning like every day something else.
Father: You’re always learning.
She describes how her Mum reacted when as a teenager she had rebelled against diabetes.
So I've, as far as sort of fussing too much it's my grandmother, my nan, she's the one that fusses too much and constantly tries to protect me from the world but she still calls me 'her babby' [laughs]. And yeah it's her I have to sort of say, 'Well look I'm twenty-two now, I'm not a baby any more'. Just sort of try and keep her at arm's length as much as I can.
His mother is more in tune with his diabetes than his dad who tends to see things more...
What about your dad?
Well my dad. He, he's even more so he will stick to what he, [sigh] That's hard to explain. It's. He's like, oh you know, he's look, you know, he was so intro, you know trying to understand. He found it harder to understand, I think he found it harder to understand than my mum did. She was more, it was more natural to her and he, you know, he's very scientific kind of person and you know if there's a problem there's a reason for it. And there's a solution to it. It's that kind of thing. And he doesn't. I don't think he understands it as well as my mum does.
Yes. There is. Well, sometimes yeah we do disagree. I try and do it all myself so my mum doesn't really have any involvement anymore. She can't really remember, you know, because. And I've changed my insulin. I've changed my blood tester and everything so it's different to how we used to do it. So we disagree sometimes and she'll listen to what I have to say and we'll work it out eventually.
Her mum and nan have been a huge support especially recently when she was in hospital.
They've had it quite difficult especially the last couple of months because obviously I've been in and out of hospital and they've been there all the time for me. They spend all their time up the hospital. And my mum's been working while, during the day, and then spending all night at the hospital with me so they've found it quite a strain with it. It's like over the years they've seen hell, like they've been through all the difficult times with me and that hell, and my diabetes has gone, like the ups or downs, they're always there. They seem, if I'm in a hypo they're the first ones there. If I'm not well, they're always there. So they've been a big support to me. So, it, they've just, I think they've coped for my sake and that, if they didn't cope I probably wouldn't cope. But, yeah, they've been, it's like the last few months have been a real, real support to me. And that, so with being in hospital, or even when I'm out of hospital now and that, they're always there for me, if I need them, and helping me through. So.
And you can talk to them?
Yeah, yeah. It's like, as I say, my nan's my mum and my mum acts more as my sister, is how I look at it. It's like I've always been close to my nan. So I feel I've always got someone there to talk to. And that, so, they're always there for me to talk to whenever I need them.
She knew her mum hated giving her injections in the beginning in case she was causing her a lot...
What did you find difficult, the idea that you have diabetes or the injecting?
Not the injecting as such no I think it was the idea of I've got this mammoth illness that's gonna be with me for the rest of my life, it's a lot to take on and I thought, 'Well okay what's it', to start off with I was thinking, 'Well what's it gonna stop me from doing?' because I'd heard, you know, you hear horror stories all the time. And I heard that you can't, it was gonna stop me from doing certain things, and the idea of having, you know, my dreams squashed at such a young age I think, apprehension I think was the main thing, it's sort of what's it gonna stop me from doing? Am I gonna be able to carry on and go off and do what I want to do? 'cause all of my friends were running around saying, 'Oh yes I'm gonna do this when I'm older, and I'm gonna do that'. And somebody asked me what I wanted to be when I grew up and I said, 'I don't know any more'. Because when you're that age you've got so many ideas and, you know, you want to run off and join the circus or, actually, [sighs] oh gosh I remember at primary school at one point me and my boyfriend at the time wanted to just run our own fire station, you know, I want to be fire fighters, so obviously that didn't come about [laughs].
She explains how her mother has been more relaxed since she started on an insulin pump, though...
But I mean, once I went on the pump she wasn't worried about it really because it's fairly simple, you know mechanism if I had a hypo or something. And I was less likely to have hypos, you know, and put the pressure on the teachers. But [background noise]'
She was more relaxed?
Yeah. She was a lot more relaxed when I was on the pump. You know, because it was a case of when I was going to have a hypo, it could be, it could be any time but, I mean, now, the chances of me having a hypo are fairly low as long as I control [background noise] my diabetes. So'
How easy or how difficult was for your mum to let go? Because she has been very involved it seems to me?
Yeah, she didn't like it at first [laughs] I sort of like, I kept saying to, 'Leave me alone, leave me alone. Let me do it myself. I have to learn to do it myself. I have to do it on my own.' And I don't think she liked that at first. And, I think she's got used to it now but sometimes I feel like, I say to my mum, 'Oh, can you help me?' And she will. But I think she's a lot more relaxed than she used to be. Which I find a lot better because I've got bothers and it's a lot easier on them for her to be focusing on them, not so much on me. But she still worries, you know. That's another thing but [laughs]'
[Laughs] What is she worried about? Anything in particular?
I think she worries when I go out [laughs].
All parents worried about that one.
Yeah, I think she just worries that I might have a hypo or go too far and have a real bad hypo and she's not there to help. But she does, she does stipulate that before I go out, if I'm meeting new, if I've got new friends or something, they know what to do if something happens and that they, they know the procedure. And she says as long as they know that then she's fine with it.
And you tell them?
Yeah. I have, I make sure that I tell all my friends what to do if I have hypos if I collapse. Or, what I need to do if I say to them I'm feeling a bit funny. But they all know what to do now, so it's a lot easier now.
Says that her relationship with her mum was good before her diagnosis but now it is even better....
She was very sad, like very upset and stuff and all our family that are in Portugal she phoned them and she was crying, explaining the situation but I think now she's getting more, you know, used to the idea. And she's very fussy over me though. She like makes my food and doesn't put any salt in it. Makes everything how it should be and yes she's just been very supportive. She's tried not to show her emotions really in front of me so that I don't get upset and stuff.
Ah but do you talk to her?
Yeah I talk to her about how I feel. Yeah. And she's, like if I'm crying she'll just comfort me and say 'Oh don't worry there's worse things, you could have cancer or you could, you know, die or something'. So it's not something that, you know. If treated well you can live a long time, you know. Diabetes isn't something where you can just die suddenly because of it. If you know how to treat it you can live like a normal, a normal life really. So she's just been encouraging me to do what I want and to not let the diabetes hold me back really.
You have always had a good relationship with your mum sort of communicate?
Yeah but it's got much better now that I've got the diabetes. That has brought us closer together I think because she's been there 110% for me. She's always there for me to talk to and, you know, and she's been more, like she hasn't stressed me out or anything. She's been understanding. So it's really good to have someone like that around to keep you strong.
He knows his parents nag him but at the same time he realises they have developed almost a second...
But at the same time you have got this support can you, do you talk to them if you feel sort of, kind of low or'?
If you have a problem or'?
They have this like, I don't know if all parents have this but they have this secret like knowledge. It's quite strange. They'll always know when there's something wrong with me. If I'm having a hypo they, they'll see it in my face. They're, they'll know what's going on with me and they'll say, '[name] are you alright? You need a can of coke' or whatever. If I'm having a high they'll say, '[name] you look high'. Do you know what I mean. 'Come and chill out and maybe take your count' and stuff like that [sigh]. So they know. I don't know how but they know.
There is Type 1 diabetes on his father side of the family and he thinks his parents feel guilty...
I've caused them anger - a lot of anger just - they want to grab hold of me and just say look get your sugar levels together. You're going to be blind and I'm not waiting there for, to be on that kidney dialysis machine with you and just sort yourself out and everything. And some will hide it and don't want to show their emotions and, they'll get like peed off and say look it's your family that gave it to him, and they'll keep it all quiet and they just thought - don't show their emotions, either.
About how you feel?
No, because I just get on with it. It's - they know I fight and just lead a normal life as possible, and they kind of just - because they feel more guilty than you do - that's the problem, and you don't want to give them a hard time, because they'll feel more - they'll get more hurt than you will. Because they'll think, oh we've given it to him and he has to go though all this and we haven't got a clue and they'll just feel more guilty so you try not to upset them or nothing, and they'll respect you for just getting on with it, and dealing with it.
So there is a history of diabetes in your family?
Yeah, on my father's side.
He's kind of like really cold about it. He works away a lot, so he's never here. He doesn't really know the thing about it and just not around it enough to know what's happening all the time, so when he comes back and you're having problems, he doesn't know really what to do, so'
It's probably more harder on him than most because he's got to keep it quiet and everything, and can't say anything because he might think we'll have a go back or nothing so he's probably got it quite hard as well. Yeah, everybody's got it hard. You've just got to keep fighting. But the main person is you, that you've got to keep yourself healthy and sort it out, and live a happy life.
Her mother was diagnosed with Type 1 diabetes when she was a teenager and has been most...
Yes. It's probably between 7 that I, it must have been around then, yes. Because it was definitely in primary school.
Do you remember much about it. I mean who encouraged you to do it?
I assume it was my mum. She's diabetic herself. So obviously she's helped me a lot throughout me having diabetes, and she's understood it. So she probably encouraged me to start trying to do it myself.
She's diabetes type 1?
So you have had kind of someone with the experience -
- of controlling -
- of dealing with diabetes?
It has helped a lot, because she can answer a lot of questions for me about it. So I don't have to keep trudging over, I don't have to keep like ringing up the diabetes nurse whenever I need help or anything.
So you talk to your mum?
Just support from friends and family really. That's, that always helps. Just, you know, a hug from a friend and a kind word will just get you through the day.
Were you, are you able to talk to your parents about it, or your mum?
Yes. Very understanding about it obviously, because my mum had it. She had, she was diagnosed when she was about 14. So she knows what it's to, like to be a teenager with diabetes.
Do you think she has been, she has worried about you more than your siblings?
I think she does worry about a lot. I think she, yes, she really does worry. But then she knows what can go wrong. And from her experiences she just knows what's happening. So she does worry a lot, because she's been there all my life, she knows what I'm like, and she knows what happens to me just personally. So I think she does worry a lot, yes. I think she does worry a lot more than anyone else in the family.
And what about when you were growing up and you wanted to, to be independent, Was she, was she a bit worried to let you take control?
I think, yes, she probably was worried. But she didn't hold me back that much. She just generally let me find out things by myself, and just lets me do what I want and find out what affects my diabetes and things like that.
And what about your dad?
Yes, well, obviously he knows, knows loads about diabetes well because my mum's had it since she was about 14. So he's just as supportive as my mum really.
Their mother still worries but they have been encouraged by the whole family to pursued their goals.
Interviewee 2' But that's what a mother's for, isn't it?
Interviewee 1' Yeah. I mean'
Interviewee 2' She worries...
Interviewee 1' There's, there's worse thing, there's worse things that we could be afflicted with, so diabetes is, is fine. They've, never given us reason to doubt that we can do anything. But mum and dad have always, and, and my step-dad, they've, all three of them have always been there. And my family, cousins, aunties, uncles. They've always just told us to go for it and no, give no reason to doubt ourselves.
Growing up with diabetes wasn't easy because she had serious hypos which made her mother more...
Yes like going for a meal with my friends or, going somewhere where there wouldn't be other parents, my mum would be more wary. Like she would make sure I take my glucose and a mobile sort of make sure that I have everything with me before I go out. And also when I was younger she wasn't as happy about letting me go just with friends. So sometimes I just stopped asking if I can go out and, 'cause I know what the answer would be so, but now that I'm older she lets me go out a lot more.
How did you feel at that time?
I knew that she was doing it for my own good, but I sort of felt that I could cope with it myself but my mum was like thinking I was too young to do, go out on my own and do those sort of things.
I mean her main concern was you sort of taking care of, because of the possibility of hypos?
And how is the situation now regarding to you going out and do things with your friends?
Yeah it's quite normal now I go out for meals and to the cinema and bowling and those sort of things with my friends so, my mum's okay with letting me do that.
Did you talk to your mum about how you felt when she didn't leave you'?
I talked to her [laughs] and convince her to letting me go, and she would sort of say, 'Maybe'. And talk it over with my dad as well, and she would sort of try and make it exceptions 'cause she said herself that she would feel bad about not letting me go. But it wasn't all time, I was usually allowed to go to most places.
And your dad, what was your dad's attitude towards it all?
He was just sort of agreeing with my mum basically.
Have you, have you talked to her or, have you had disagreements about these issues or?
Sometimes, I think it's more about growing as a child in general not just with diabetes, but, it has a factor in arguments that we'd have. Like if I wanted to, mainly going out and being more independent myself when I was, like a couple of years ago my mum would be a lot more wary, but now she's sort of understanding that I am responsible enough to go out on my own. And my, I have an older sister who's four years older and she sort of looks out for me as well, makes sure that I've got the right things when I go out and she'll like call me every now and again.
She was very dependent on her parents until she started to do her own injections. Now, her...
Yeah, yeah we used to talk about it and stuff, and they were like quite positive saying like, 'You'll be able to do it some day, you know, you just need the help', but I still was uneasy about it because I didn't think I'd be able to do it at all. Like I said to the counsellor I didn't think I'd be able to - able to do my injections, just because of having to take on the responsibility and stuff. But, no they were really supportive all the way through and really helped, so, I'm quite lucky, yeah so'
Now tell me in which way your parents have had to accommodate to these changes?
Yeah, I think in a way it - it took them for six in a way because every day they were used to injecting me, and it feels weird for them not to now, because it's nearly, nearly - next July nearly a year, and I asked them the other day and it feels weird for them because they don't have to look after me as much as they used to, like doing my injections and stuff like that. So it's - but I think they've become more independent. Like they don't mind going out or whatever and leaving me with my friends, and knowing that I can loo after myself now, whereas before they were a bit scared to- to let me do stuff, because they knew that I was so dependent on them, but I think in a way they've become more - they've become more - like confident, so yeah, it's changed for everyone, not just me. Like it enfolds the whole family. It sort of changes them as well, so it's a big change.
So they were anxious before because they didn't know what -
Yeah, yeah, they didn't know if I knew how to look after myself and stuff, but now it's the opposite. They know I can look after myself so they're fine at doing what they want to do, so' yeah.
She says that her mother sometimes finds it hard not to take control particularly over food, and...
Hmm. The only thing is my mum's been used to caring for me. She's been the one taken particular responsibility for diabetes care in the early years and at that stage I had a very, very strict diet. So I find she's on my back a lot of the time. When I speak to her on the phone, she'll be saying, 'Oh how have your levels been in the past few days?' Or if I come home say we eat out at a restaurant, she might say, 'Oh [name], you can't eat that', and this or 'why are you eating that bit there', whilst I've taken over the responsibility for the care now and I know in myself that I can sometimes eat certain thing that she may not necessarily have given me in the past with the way she was doing it and there's a bit of a conflict of interest and responsibility. So I've found that a bit difficult with my mum. Sometimes that she's wanting to take control and if something isn't going perfectly for me, she'll want to find all the solutions and tell me how to do it where really I'm the only one that can make that decision, myself, in the long run.
Have you tried to talk to her about it?
I have but she'll tell me it's all in my best interest and she looked after me for so many years with my diabetes and tried so hard and she'd' she doesn't want to stop and let it not be as well controlled now because it's still her responsibility. She's still my mum. She finds it a bit hard to step back, now that's officially an adult, I suppose [laughs].
And have been sort of a main conflict would you say?
Definitely, it's been quite a major conflict recently. Mum can't accept that I get the odd time when I'm high here or there and or of I've had a few in row she'll' I think she feels partially responsible herself that she's not doing more to correct it and make sure it's right. And she's seen a lot of the information about complications that you can get in further years and I think she's just quite worried that anything like that could happen to me in the future if I don't watch out.
He was diagnosed at the age of sixteen and says that his whole family including his mother let...
Support from the family again my mum was, mum as just really quite supportive just saying, you know didn't mollycoddle me, didn't, she, like I was quite independent with it right from the word go, I didn't feel like I needed anybody to help me get things together, help me, make sure I was doing my injections right didn't feel like I needed any help doing that. but I was very gracious of the fact that my mum would quite often make me breakfast in bed while I'd just been, just been diagnosed and she'd get me up and say, 'Right come on you need to do injection, here's your breakfast in bed,' things like that. My, one of the best things that that they managed to do as well is just sort of let me get on with it and not sort of make it too much of an issue. I, I'd hate it if every, every time there was ever a problem, and if I was like it was always, 'Is your diabetes alright, is your diabetes alright?' I personally wouldn't, wouldn't like that. My sister has been aware of the condition right from the start and she's just been, she's been there for me all the time when I've kind of I've had any issues she's been there telling people that you know he's diabetic just he needs some sugar, this and that you know.
The support, the support, I've had more support from sort of friends, that's why I said it was important to make sure that you do tell your friends. My family, my family are totally aware of everything but they just, they don't pander to me and they don't, they don't pander to me and they don't make too much of an issue of it either so it's kind of they leave it up to me to sort out and they know that I'm the sort of, the one who'll be the best at managing it and dealing with it.
Says that every time she feels tempted to miss an insulin injection she talks to her parents who...
It must have been quite difficult for your parents?
Yeah, it was really difficult. It's, yeah, I mean, I've felt so guilty about all the upset I've caused them.
But at the same time it seems to me that you have a strong relationship with them?
Yeah, it's definitely made, given us a stronger relationship. And I can talk to my mum about anything And my dad, I suppose. My dad's he's found it probably the hardest out of both my parents to deal with. I think partly because men are less sensitive anyway and they can't get their head round things like that. And he's quite old fashioned so that didn't help. But he's, he, he's learnt to, how to cope with it in his own way.
And they just feel really bad. You know, they, they've said, you know, 'We wish we could have the diabetes for you. And we'd take it away if we could.' But, you know, it's, it's just unfortunate. But, I don't, I don't feel sorry for myself that I've got diabetes and I don't feel different and, you know, if I go out and I'm in a restaurant I'll do an injection at the table. I don't, I don't feel like I have to go, you know, into the toilets to do it. And if anybody's got a problem with it, then that's their problem. You know, it's not mine. It's just something I've got to do. And it really annoyed me like when I'm doing an injection and people go, 'Oh, does that hurt?' Or, you know, they pull a face and go, 'Oh I don't' know how you can do that?' But, if I, and I really just don't want people to feel sorry for me about it. Because it's nothing to feel sorry about. It's just, you know, there's much worse things you can have than diabetes.
He realises that his mother was very anxious when he was first diagnosed but that now both his...
Well I mean I've learned, I've learnt in hindsight that, you know, I think particularly my mum was very, very stressed out by it initially and very worried but they never, they never overtly showed that to me. I never got the impression from them, you know, about their anxiety or anything about it. I think they, they didn't obviously didn't want to show that to me because it would just make me worried. But, but they seem fine with it. I mean I was speaking to one of my aunts last night actually and you know she was just saying that she's just admires that I just get on with it and you know, I don't, I don't complain about it. I don't make it an, an issue. Well I said that's exactly how I want it to be because if I don't make it an issue then it's not going to be an issue for anyone else so. Just try, try and get on with things really.
Were they worried for instance that you were not managing your diabetes?
No. No. Just that they haven't, they haven't. Well I mean particularly the, the last you know, last few years sort of as I would say when I was an adult that you know it's been, it's been well-controlled and I've, because I haven't ever had, you know, many severe hypos or anything like that I think as time goes on, you know, they've got less and less stressed out about it and they're just more relaxed about it because they know that, that I can, you know, control it myself so.
So it was more a kind of question, I mean your mum went with you to the consultation?
Yeah but she. No, no she wouldn't, she wouldn't come in to the, to the room with me she'd just wait.
And so since, how old were you when you started going to see the doctor on your own?
Seventeen when I could drive but I guess a few years before that so, maybe fifteen.
It was something that was discussed between you and your mum or...?
Well I, they, you know it was left up to me and they, they, they would, might start saying, you know, do you want me to come in with you and I would just say no because there wasn't any real need for, for them to, for them to come in the room.
And they, and she was respected that?
Says that his sisters get annoyed because of the extra attention he gets at home but that he...
He thinks that his relationship with his sister has improved now that they are older and says...
Has in any way, it sort of impacted the fact that you have diabetes?
No. I don't think so. I think it's lucky that I've got it and not her because she's really squeamish about you know injections and things, things like that. But no I don't think it has. Just I think as, what I've found anyway with my sister that as you get older anyway your relationship improves with, with your sister or if you, if you have a brother because you get, you both get more mature and you know you've both gone to university. You go through similar things so I'd say you know we've got a lot closer in that respect anyway. But I think that's, you know that's just what happens with everyone. Everyone grows up a bit and doesn't argue all the time.
Lewis’ younger sister felt ‘jealous’ when he went to meet the Queen and finds it tiring when the family conversation is all about diabetes.
Lewis’s sister: Sometimes like when Lewis is really ... high he’ll go all silly and it makes me laugh and everything. But then it I try my hardest cos I know that it, it’s not his fault. Like cos he’s the one who has to deal with it and that but like he has to, when he be silly like we have to try not to laugh because we know that it’s not his fault and he can’t control that. And like he makes. Sometimes it makes me feel like [whispers] well when like bef-, Lewis gets opportunities to meet the Queen and that. I feel a bit jealous of him but like at the same time I’m proud because he’s got that opportunity to meet the Queen and things like this, things like this makes me jealous but I’m also happy for him because he gets these all sorts of nice opportunities for himself and that.
Well I normally think that a lot because they’re always talking about diabetes and canulas and insulin and everything. And I just like want to talk about the day and then let them talk about diabetes afterwards. It’s like cos it makes me feel a bit left out but like not left out at the same time because they talk about the day after they’ve talked about all this diabetic stuff for like it makes me feel better instead of them just carrying on with this set conversation and everything. And they’ll let us talk about what our day has been like and everything.
Last reviewed December 2017.
Last updated December 2017.