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.

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Age at interview: 12

Sex: Male

Age at diagnosis: 4

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Lewis: I think for all of us it was definitely a shock at first and thinking of the idea of living it my whole life and having to do my injections, my pump is probably really daunting. So it, the fact it takes you a while to get over the fact that right, I’ve got it I have to deal with it. There is nothing I can do. I mean I was only small then so I was thinking, the doctors will fix it, the doctors will fix it. And soon it started to occur to me that they weren’t going to fix it. So I’m just going to have to step up and sort it because nobody else is going to do it. So that’s when I start m-. My mum and dad started to teach me how to carb count and how to inject. I mean I was still unsure what to do but they were trying their best to help me as well. So we sort of like we learn from each others mistakes and we sort of help each other. So like if my mum or dad forgets then I can remind them. And if I forget something they can remind me. So it’s sort of like a team work, team work to keep yourself like team work to learn everything but sort of half, half team work, half con-, like yourselves.

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.

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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Yeah, I do have my moments, I do have my rebellion moments and, I still do, which, you know, you will do sometimes I mean, I've now got my fianc' on top me as well saying, 'Come on you've got to have a snack now'. And sometimes you're thinking 'I don't want to, I don't want, I don't wanna play any more, I'm fed up now' so you do get a bit fed up sometimes. But my mum she's quite a, [sniffs] how do I describe her? She's, she's a great woman, I love her with all my heart she's, she is been my rock throughout my life, and she's like, 'Oh right then well what colour flowers do you want at your funeral?'. And, you know, she, that's how she deals with it [laughs], you know? If I'm sat there saying, 'No, I don't wanna take my insulin, no I don't wanna do my blood sugars', 'No I've had enough I'm fed up now'. That's how she'll deal with it, she'll say, 'Oh right fine, what flowers do you want at your funeral?'. Or, 'What fruit d'you want me to bring you in the hospital?'. Or something like that, she's, and it works as well, you know, shock tactics of thinking 'oh okay hang on a minute' [laughs]. You know, 'Oh alright then I'll do it'. [Laughs] so and like I say it does work she [laughs] bless her, she, she's just like that, you know, she'll just say, 'Well okay fine, fair enough you don't wanna do it it's your choice but, I'm not gonna come and visit you when you're ill'. So it's, it sort of shocks you into thinking, 'Well hang on a minute it's not just me, I've got to think about you', it's all my other family and friends that are gonna have to witness me being poorly so, I think I do it for them as much as I do it for me.

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.

Generally parents were said to take different roles and responsibilities. Usually both parents provided support and encouragement, but most young people said their mothers got more involved practically and emotionally than their fathers, several of whom were described as 'distant'. Young people talked about how much their parents had been upset by their diagnoses, especially at the beginning.

His mother is more in tune with his diabetes than his dad who tends to see things more...

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Age at interview: 17

Sex: Male

Age at diagnosis: 3

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Not with diabetes, no because, you know, she trusts me and that's, that's nice as well. She well she trusts me most of the time. You know, she sees. You know, I have a really, big milkshake and she'll go, she know, you know. 'I hope you're going low if you're going to have that.' That kind of thing. But yeah, because my, you know when I go to the go and have my check-ups and they say, 'Well you're doing really well'. Then she knows I'm doing the right thing. And even if it doesn't, if it doesn't seem the right thing to her she'll know because I've told her so many times, that diabetes is different for everyone. So you know, it's your own diabetes and no one else's yeah.

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.

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Age at interview: 18

Sex: Female

Age at diagnosis: 6

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And finally, how have your mum and your gran coped?

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.

At whatever point young people were diagnosed with diabetes, most said that initially it was their mothers who helped them learn how to look after themselves. Mothers usually took them to the diabetes clinic for checkups and kept in touch with nurses and consultants. Many young people said their mothers used to do all their injections and several described how difficult it had been for their mothers. Once they felt they knew what they were doing, most young people said that they wanted their mothers to 'back off' a bit and let them be more independent.

She knew her mum hated giving her injections in the beginning in case she was causing her a lot...

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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My mum did obviously yes the, 'cause there's certain areas that you can't reach yourself she's always sort of, 'D'you want me to do it for you?'. It took her a long time to really come to terms with having to inject her own daughter and every time she would do it, you know, she could see it would hurt if I flinched and, she would always apologise and end up in tears, then we'd all end up crying and I'd be, 'It's okay, it's okay.' You know, 'You keeping me alive'. And it was, like I say, very difficult to start off with but as, as time went on I adapted very, very quickly as you do when you're a child and'

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...

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Age at interview: 18

Sex: Female

Age at diagnosis: 7

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It was after sort of a year or two then I started to, once the teachers understood what was going on that's when I started going on a bit more school trips. But I mean, our school trips stopped after a couple of years anyway [laughs] but, yeah, I was able to go out and my mum was a bit more relaxed about it.

Hmm.

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.

In many instances young people said their relationship with their parents and families changed after they were diagnosed and that they became even closer. Several young people commented on how certain members of their families seemed to know instinctively when they were ill, sometimes even before they knew it themselves.

Says that her relationship with her mum was good before her diagnosis but now it is even better....

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Age at interview: 18

Sex: Female

Age at diagnosis: 18

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How has your mum reacted to the news of you?

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...

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Age at interview: 17

Sex: Male

Age at diagnosis: 14

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I got a lot of help from my family. You know, because you need your family to support you to feel comfortable with what's going on. And one of the things that you'll learn is your mum and dad do nag you. They, they will nag you a hell of a lot. You've got to do your injection. They will remind you so much but they're doing it for your own good. They and [sigh] they know this but I never tell them. They do, they do it for your own good. They don't mean to nag but they, they care about you and well they, you know, they want, they want you to survive just like anyone else. Do you know what I mean.

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'?

They

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.

Parental worry and anxiety could lead to problems and strained family relationships. Some young people said that they felt they wanted to protect their parents' feelings and so chose not to talk to them about diabetes. Other young people said that they went through times when being diabetic made them feel moody and angry which they knew had made them difficult to live with.

There is Type 1 diabetes on his father side of the family and he thinks his parents feel guilty...

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Age at interview: 16

Sex: Male

Age at diagnosis: 10

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How do you think your diabetes has affected your parents? In which way do you think? Are they more worried about you?

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...

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Age at interview: 17

Sex: Female

Age at diagnosis: 2

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Now you said that you started doing your injections when you were age 6 or 7?

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?

Yes.

So you have had kind of someone with the experience -

Yes.

- of controlling -

Yes.

- 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?

Yes.

What helped?

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.

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Age at interview: 18

Sex: Male

Age at diagnosis: 9

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Interviewee 1' Well my mum was very worried when we were first diagnosed. My dad was too but he wasn't there so we couldn't judge his reaction, because he was, like I said, he was in America. But my mum was really worried about, about the consequences. After a few months I think it started, she started to settle down but she still, like sometimes she'll still look at us when we're doing our injections and just, you can see that's she's thinking, 'You know, I wish they didn't have to do that.' She really, she really wants us to not have to do it. But we've leant to live with it and there's'

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...

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Age at interview: 16

Sex: Female

Age at diagnosis: 7

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So from your perspective one of the things about growing up with it was to be a little bit, or restricted or limited in the things like going out and doing things that you wanted to do?

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?

Yeah.

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.

Looking back on their teenage years, many young people explained how they had wanted to take more control of their diabetes and be allowed to make decisions for themselves - even if that meant making mistakes sometimes. (See also 'Managing diabetes as a teenager'). Working out how to take responsibility away from parents could take time and often depended on when the diabetes had occurred - those who were diagnosed as children were more used to their parents having control - whereas those who were diagnosed from the age of about 16 said they wanted more freedom and autonomy. Even if they had argued with their parents, most people said they seemed to understand each other better as time went on.

She was very dependent on her parents until she started to do her own injections. Now, her...

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Age at interview: 17

Sex: Female

Age at diagnosis: 3

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Did you talk to your parents about how you were feeling?

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...

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Age at interview: 19

Sex: Female

Age at diagnosis: 3

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Now regarding your family it seems that they have been quite supportive?

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...

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Age at interview: 24

Sex: Male

Age at diagnosis: 16

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Can you tell me a little bit more about that?

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.

Relationships could also become strained when the young person's blood glucose levels fluctuated especially when parents responded by trying to take more control or give advice. Several young women talked about their experience of eating disorders and how they had stopped taking insulin - one young woman said she knew how edgy and secretive she became towards her family as she struggled with her diabetes and her eating disorder.

Says that every time she feels tempted to miss an insulin injection she talks to her parents who...

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Age at interview: 19

Sex: Female

Age at diagnosis: 14

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Because I still sometimes feel like I'd like to miss them. It's tempting. I've been doing it now for, properly, you know, just for a few months but if, if I start feeling like I'm not going to do it, then I'll phone my mum if, or I'll, you know, I'll text my dad and say it. You know, I'm thinking about not doing this injection [laughs]. And, I mean, they'll be straight on the phone and you know, convince me to do it. Or I'll go and tell a flat mate. It's like, don't let yourself think about it too much, just go and tell somebody immediately and they'll make you do it and then you won't have a choice. And that's the only way. That's really it's a good way actually of helping yourself.

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.

Hmm. OK.

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...

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Age at interview: 20

Sex: Male

Age at diagnosis: 10

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How have your parents responded, I mean have, were they anxious or worried or'?

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?

Yeah

Most described their relationships with brothers and sisters as 'normal'. Those with older sisters said they were generally very supportive. Others said they appreciated having brothers/sisters who recognised when they were 'going hypo' and who knew exactly what to do, including giving them injections if necessary. Young people pointed out that as they grew older their relationships with their siblings had improved and that diabetes became less of an issue. But younger children could feel 'left out' as parents attend to the needs of their siblings.

Says that his sisters get annoyed because of the extra attention he gets at home but that he...

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Age at interview: 16

Sex: Male

Age at diagnosis: 11

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The only person who has responded to my diabetes in any way whatsoever are my sisters. And my sisters, because you've got this whole sister-brother situation where you've, I'm not that friendly with my sisters. And if they see me being allowed to, or being concentrated on because you're having a hypo and need the extra attention, like, even like, it's just like, even if it's just for ten minutes or if it means that you're going to get served first at dinner because your blood sugar is getting low and you need to eat soon. Everybody, everybody in the whole world is fine with it, honestly, except my sisters, or if you have any siblings, because they get annoyed at the extra attention. And I don't blame them. I mean I would say it would get me annoyed sometimes if it was the other way round. But honestly I wouldn't worry about things like that.

He thinks that his relationship with his sister has improved now that they are older and says...

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Age at interview: 20

Sex: Male

Age at diagnosis: 10

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I have a sister yes.

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.

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Age at interview: 12

Sex: Male

Age at diagnosis: 4

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How does it make you feel? What do you find difficult or sometimes annoying. I mean any kind of feelings that you, you might have.

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.