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Long term health conditions (young people)

Dealing with the family

The diagnosis of a long-term (chronic) condition in a child or teenager usually affects the whole family. It can take time for parents, brothers, sisters and grandparents to learn about the family member's condition and work out how best to help. Relationships between young people with a long-term condition and parents can become particularly intense at the point when young person would usually be leaving home. Here, young people talk about how they feel about their parents and about their siblings. They reflect on how they've coped with growing up and attempting to become independent. 

 

His parents, sister and grandparents have all helped him cope with arthritis.

His parents, sister and grandparents have all helped him cope with arthritis.

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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At the start my parents played a big role obviously because I was so, when I was in hospital for two weeks they were, mum stayed in hospital. And they were very involved when I was back at home because obviously when I needed help in the night, when I was in pain in the night they'd come and help and comfort me, very supportive all the, all the time. And the same when it, when I had my flare up in 2000. And now I'm in remission  they play a part. You know they take, take me to the hospital. Offer me support if, well if I want any advice or anything and help me when I go away. Then, you know, they might carry my stuff for me, all my injections and everything. And I'd say it's affected them a lot when it first flared up. 'Cause obviously it's a big worry [ha ha] when you know, I was only ten at the time. So it was a lot of worry and I'd say my grandparents as well 'cause they came over to stay and look after my sister while mum and dad were at hospital. And I'd say my, my grandparents that I was with when it flared for the first time and they were very worried and didn't feel guilty but, you know, when it happened and they were responsible for me they must have felt a bit uneasy.  

And how's your relationship with your sister?

I've got a fairly good relationship, brother and sister relationship [laugh]. She helped me a lot at primary school. She was very helpful with taking me out in a wheelchair and stuff like when I was at break times and stuff. So I was very appreciative of that.

She's older or younger?

So she's 20 so she's older.

They weren't. They didn't restrict me. They never restricted me from doing anything but they just. My mum was probably a bit more cautious, you know. 'Just watch what you're doing. Just make sure, not overdoing it.' But they never restricted me. They just, you know, 'Are you sure you're going to be able to do it? You know what you're doing?' So never restricted me just sort of supported me in what I've done and just, just gave me a word of caution if anything but never restricted me from doing anything.

All the young people we talked to said they recognised that they could not have coped without the love, encouragement and practical support of their parents, though some of them said they had gone through bad times when they blamed their parents for what was wrong with them. Many talked about how upset, their parents had been by their diagnoses and how they'd realised that their medical condition caused worry and anxiety for their parents. 

 

Both his parents have given him so much love and support it has made it much easier for him to...

Both his parents have given him so much love and support it has made it much easier for him to...

Age at interview: 23
Sex: Male
Age at diagnosis: 15
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What has helped?

Well my parents and my family. I mean I am very thankful for my parents and my family for the love that is there and the support and the care that we all have for one another. And my parents have been just amazing to me over the last eight years. And that has been the saving thing because without wanting to be too melodramatic you know one thinks of committing suicide, I have thought of that a few times, but my parents are so wonderful to me. And obviously I can never do that because my parents love me so much and yes my parents love me so much. And when you get out of that cycle and then you start feeling a bit better then you realise of course you don't want to commit suicide. Of course life is good and stuff. But just sometimes I think the point is that sometimes it feels so all-encompassing and so difficult that  it is just difficult and you just want to try and find another way out of it.

The first thing that I remember. I think it is almost to the day eight years ago when my mother came to pick me up and I remember [laughs], I remember she came to pick me up, and she was driving back because it was in London and we live in [city] and she was driving back down the motorway and I was sort of in the passenger seat, I had put it all the way down and was lying there and staring at her and I remember her looking so worried, but loving me so much and just saying that we were going to get it sorted out and stuff and I wouldn't have been able to do anything without them. Because nobody didn't know what was wrong. But they were determined you know to find out. And we would look into it and stuff and we went to all these different doctors and they spent lots of money on these alternative remedies and stuff, none of which worked, but it we still persevered with it.

My father has been amazing. I don't go to an ME support group because I find them, I find it quite difficult but he has always gone and he has always been very support of it. And you know they say they are proud of me and they are supportive and that really does make the world of difference. Because it is incredibly difficult and you don't now what on earth is going on and you need help and support and you know to have them give me the help and support has made such a difference because you can't do it on your own. Especially when you are, especially when you are 15 and you don't really know what is going on at the best of times. You know. You have so many other things on your mind and you are trying to deal with stuff. But then when you parents are there and they are being really helpful that is amazing and fine - it would have been complicated if they hadn't been there. It would have been less likely that I would be here if my parents wouldn't have been there for me. 

 

When she was a teenager she felt angry and blamed her mother for her epilepsy but now their...

When she was a teenager she felt angry and blamed her mother for her epilepsy but now their...

Age at interview: 24
Sex: Female
Age at diagnosis: 17
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But I don't know. It's fine yeah. So I think that probably. I think because of where I was at before and then having epilepsy, having been diagnosed with it probably made her worry sort of ten-fold over those things. She was probably concerned about them before but then because the epilepsy happened she was even more like, 'Right I need to know where you are, what you're doing, who you're with'. You know, 'Exactly what's going on. Have you drunk anything?' You know, 'Have you taken your medication?' All of those sorts of things but. 

And again I was angry about being diagnosed with epilepsy and probably part of me did blame her a bit for, for like. Obviously it wasn't her fault [laugh] but you know I think, I think it's. You sort of look, you look to blame people when things like this, when, when bad things happen you look to blame other people for them so you don't have to sort of take any responsibility for it or even accept it. It's easier just sort of to pass it off and go. 'Actually you're the reason that this is happening to me and I hate you for that because you've made me have this bastard illness that is now going to follow me around like a shadow for the rest of my life.' And no one wants that. No one does like it's just not something.

It must have been hurtful.

For her.

Yeah oh I'm sure it was and I think again now because we have a good relationship and we can have more of an open conversation about my epilepsy and how it's effecting me and stuff because I think [sigh]. I don't know [sigh].

So how did you react when she said to you for instance, 'Oh you can't go out or I want to know where you are' or things like that?

Oh it made me not. Like everything that she said she wanted, I wanted to do the exact opposite and not, not phone her, not let her know what I doing. You know not tell her if I'd been drinking because obviously. Because she knew what triggers there were for me as well and she knew that alcohol was one of those and you know it's what a lot of [laugh] teenager do is go and get drunk. And she was probably really worried about that aspect and that, you know because I. You know I had, if you go out in a big group of friends and stuff. Like I could have been left you know if I'd have had a fit or something and someone hadn't have noticed you know because everyone was pissed out of their heads she'd have felt really guilty probably if anything like really bad had happened. So you know now it, I can understand why she wanted me to do all of those things. But at the time I just was, I just felt angry about it because it just, it seemed really unfair that everyone else could do what they wanted and I couldn't or felt I couldn't. But I still managed [laugh] I still managed to go and do quite a lot of, a lot of stuff really. And I think also like, I think she sort of did recognise a bit that when she was saying those things she could probably sort of recognise that it was making me more like push, you know more pushing her away. And I think it, you know, it's, it's adjustment. It's an adjustment for everyone. It's you know like having an illness like that when you're a teenager it doesn't just affect you. You feel like it does just affect you but actually it affects everyone in your family and everyone that's close to you because they're all going to worry. It's sort of unavoidable really but.

Talking about Mums

Many young people described how their mothers had taken more control of the practicalities of their illness than their fathers. They said that it was their mothers who managed practical things like medication, repeat prescriptions, arranging checks ups and appointments. And that it was also mothers who took responsibility for keeping in touch with nurses and consultants, and who took them to hospital when they were ill or needing treatment.

 

She describes how her mum had to put her own life on hold because she spent all her time and...

She describes how her mum had to put her own life on hold because she spent all her time and...

Age at interview: 23
Sex: Female
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I do know that I had quite a bit of hospital treatment when I was younger and we first moved back over. And my mum would often camp out on a bed next to mine and at that time IV treatment home intravenous treatment wasn't very common.  So most of my treatment was in hospital. And my mum sort of, she was a housewife at the time but she had just taken her A-levels. She had planned on a career and she had to sort of put that on hold because she felt that she had to stay at home and give, give me her full care and attention. And so obviously my dad was the main breadwinner and she'd stay at home with me. And you know, she'd have to run me back and forth to the hospital. I mean we were based, we were living in, in [city] at that time and then [city]. And my centre is in between there and obviously she, she had to do a lot of running about going back and forth. 

It wasn't in, the centre wasn't in the city we were living in so it was hard for her in terms of not just physically demanding but it was also cost and things as well. She had to do a lot of running around you know, back and forth every six weeks for appointments and things. You know making sure that all my repeat prescriptions were ordered that you know, they didn't have the repeat prescription service that they have now. And she had to, you know go, make the effort to go to the doctor's and then go to the pharmacist. You know organise all that. At a very, very young age she was only seventeen when she had me so coped extremely well [laugh].

 

Says that her mum worries about her because she's a mum but that she also knows when to back off.

Says that her mum worries about her because she's a mum but that she also knows when to back off.

Age at interview: 22
Sex: Female
Age at diagnosis: 16
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Yes, yes. My mum worries about me even now. She'll always worry about me because she's my mum. She'll never stop being my mum. But, yes, she does worry. She, you know, she'll, in the morning, if my walking's really bad, she'll say, 'Do you really need to go to work today?' And she'll say, 'What are you going to do when you go to work today?' And sometimes like if I'm not feeling very well at work I'll actually phone my mum. And, yes, they've always worried about me, even when I was in like sixth form. When I was in university, they did, did worry about me then as well. Because they used to ask what lectures have I got? Will I be all right getting home? If I'm going to the library, give them a ring. And sometimes you need to take about ten books there sometimes. I mean I could never carry ten books. So they do worry. But I know they only do it because they care.

Do you think that at some stages they might be more overprotective or, towards you than your sister? Or just the caring?

No, I don't think they do actually. Because it's nice to know that they're there if I need them. But I've never really felt really smothered by them, or I've never thought that I didn't want them there. You know, I think it's because they, they let me get on with things to a certain extent, they'll let me deal, deal with things. And when things get too far then they'll step in and they'll say, 'Right, you're not going out today'. I can understand why they do it. I know sometimes I don't like being told, 'Well, go and have a bath because your walking's bad'. But they do it because they care.
 

But mothers could also worry too much. Some young people said that their mothers could be overprotective and described how it had caused tension especially when they wanted to go out with friends or travel abroad. 

 

She feels that her mum can be 'a bit mollycoddly' and that she worries too much about her going out.

She feels that her mum can be 'a bit mollycoddly' and that she worries too much about her going out.

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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He agrees with me that she can be a bit mollycoddly. That is why I kind of want to move away next year because at uni. But it is kind of we have come to an agreement that I am moving away not too far but far enough that if I do need help and so, like [city], that if I do need help, if I have a funny turn then, if I do need her, I ring her, and she is able to just get in the car and come and pick me up. So ' [laughs] So I want that freedom just to get out of, be able to.

Yes to do what you want to do?

Trying.

Okay. So that's one of your difficulties at the moment?

Yes.

Okay. Do you talk to her or do you argue it with her? Or '?

Yes. All of the above [laughs].

All of them. I know it is difficult'

I make new friends and she doesn't believe that ' because I talk to my friends and I believe that all of my friends should know what to do in the case that I do have a fit. I am quite ' she knows that I am sensible [laugh]. But it is like she doesn't trust me. So it feels like a down on that, [crying].

So do you go out with your friends or she makes it difficult for you to out?

It is like I want to go for the first time clubbing this Wednesday and she is making it difficult for me. So I can kind of make my way back by getting a bus to my friends house and then like staying there for part of the night and then getting the morning bus back to here. But no, she is going to get up, I think, at 2 o'clock in the morning just to drive all the way to [city] where I am going clubbing and pick me up [laughs]. Just to make sure I am safe or something [laughs]. Which I suppose it is all right in some respects, but it is just '[laughs].

Has this always been the case or was it less of an issue when you were younger?

Well I didn't really go out so.

Okay.

And she doesn't know these friends as much as she did my old friends because I am with a new group now so they didn't know me when I was having fits you know. And I was diagnosed and then I was ' So they are a completely new group of people. So '

But they do know about you epilepsy?

Yes.

Several young people, whose mums had been single, said it must have been hard for them to manage their other children as well. Grandparents were often a great help, particularly as babysitters of other children in the family and also because they were able to give mothers some time off.

 

Her mother got worn out trying to cope with her CF when she was young and sometimes needed help...

Her mother got worn out trying to cope with her CF when she was young and sometimes needed help...

Age at interview: 21
Sex: Female
Age at diagnosis: 4
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Yeah, it affected my mum quite badly because she, my dad worked away when I was younger and he was home, I think it was every other weekend, or every weekend, and then the times when he wasn't there my mum was the one who was up with us, and I would have constant chest infections, this was before I was diagnosed, so I'd have constant chest infections, I wouldn't be able to run around when I was younger because I would just be absolutely shattered after five minutes and absolutely drenched in sweat and it would be really quite severe, and  she used to get the doctors out, like my local GP, she used to call out every, more or less every day. She was getting no sleep. I was having no sleep, and, when he came I would be fine for like the ten minutes that he was there, you know the symptoms would be eased compared to what they were, and, for a lot of the time they were blaming my mum for being neurotic and saying that there was nothing wrong with us, I was a healthy child and it was frustrating for my mum and you know she used, she didn't used to get a lot of sleep because obviously my brother was young as well at the time, so she had to look after him and look after me, and she had to rely on family and neighbours to come and take care when she had the chance to sleep, but she was very anxious and worried and she went through a really really bad time until my diagnosis when everybody sort of stood up and sort of says, 'Ah, well there is actually a problem.' And it was like late eighties so, there wasn't as much known about CF back then, than what it was, people really didn't tend to reach past their teens, it was rare, so my mum was faced with this massive, sort of diagnosis, and, she was told that you know, the future was looking bleak for us, and I wouldn't get any better, and it was obviously really more difficult for her than anybody else, but, you know, once people started opening their eyes and seeing that there was something wrong, she was able to get the support that she needed and things like that so that it was probably most hard for her. 

 

Her mum has never let her go to hospital by herself and has always taken her sister along too.

Her mum has never let her go to hospital by herself and has always taken her sister along too.

Age at interview: 23
Sex: Female
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I think when, because I have a younger sister as well and my mum's a single parent, so when we were younger literally she could just pick me up and pick my sister up and there were two little girls. But as, you know we're both older now she doesn't really want to leave one and, you know, leave my sister at home. I mean it's hard. And you know to deal with now we're working and. And if so, if my mum can look after me at home. And the thing is my mum's always. There's never been a time when I've been in hospital by myself. You know, in the morning my mum's there, afternoon, mum's there at the night time and so is my sister.

But now as we get older my sister has to go to work. You know then my sister has to come home by herself and my mum can't be in two places at once so it's quite hard. So as I got older my mum was there less of the time with me so she could half the time be with my sister. So if there is a time when I can stay home and the pain's not that bad then it's easier because my sister come home from school, come home from work and my mum will be there for both of us.

Talking about Dads

Some fathers were said to have been fantastically supportive and involved, others less so. 

A teenager who had to spend a long time in hospital following a kidney transplant said that her illness had brought all of her family closer.

 

She used to think that her dad didn't care about her epilepsy but now she has a better...

She used to think that her dad didn't care about her epilepsy but now she has a better...

Age at interview: 24
Sex: Female
Age at diagnosis: 17
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And your father?

Yeah I didn't have a great relationship with my dad when I was growing up. And he didn't play like a, he didn't play such a big role in my life through my teens. Like it's not that we didn't get on so much it was more, because I didn't have arguments with him like I had with my mum. Like me and my mum would have blazing rows where we'd be screaming at one another and it was more that, like I just don't [laugh] sounds really stupid but I don't really remember him being like very involved in sort of anything about my life really. And certainly not about my epilepsy. I don't think he ever came, like my mum would be the one that would want to come to the appointments with me and stuff but my dad didn't. But then in saying that I don't know if that's because like my mum was, made herself more involved that he sort felt that he could take a back seat if you like. Because my mum likes to talk quite a lot and my dad's much more silent like he observes things. He's very observant I'm sure and. But when I was younger I didn't see that. Like I, to me it just seemed that he didn't care but I'm sure he did care but he just had, has a different way of, of showing it I suppose. But I mean now we've got a much better relationship and. But it, I don't. It's strange actually I don't think I've ever really spoken to him like in any sort of depth about my epilepsy or how it's affected me. Like I think my mum probably has much more of an understanding. But then I'm sure she tells him [laugh] so he doesn't, he doesn't feel like he needs to ask me because he's heard it from her.

 

Despite money problems she feels that her condition has brought the family much closer.

Despite money problems she feels that her condition has brought the family much closer.

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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I think in ways it has brought us closer together, we all tend to, talk to each other a lot more, like tell each other things more. That's within like the people that live in the house, and me and my sister we were never that close to my stepdad, but I think since my illness we've become a lot closer to him. We've, you realised just, it's just, I can't think of how you can put it but, like you said you realise that you have to appreciate things more. And we were just happy that my Mum was happy again, and she had found someone 'When it comes to my Dad we found that a bit harder, I don't think he tended to understand what had gone on either, you know he tried to be supportive but I don't see him that often so it makes it a bit difficult. Apart from that I'd say that yeah it has brought our family closer.

In terms of financially?

That's been difficult, that's been really difficult. I mean my Mum had to take a lot of time off work and they gave her a certain amount of sick pay, but not really, because you know she had brought it on herself having the surgery, and my stepdad is in the army, so he only get's a certain amount of time off each year and he had to take all his time off in one go, therefore then when he went back to work he had to really work long hours to make up that money again. Which that put a lot of strain on the family.
 

Several young people said that when they were younger they'd found it difficult to talk to their dads about anything connected with their illness. Some said they felt that their dads didn't want to know about their problems. Others thought that their dads might appear 'emotionally distant' but actually felt deeply about them on the inside. One young woman wondered if her dad might have felt 'pushed aside' by her mother.

Some young people stressed the point that fathers do care but do not show their emotions in the same way as mothers. One young man said that his father helped to provide things in life that were not directly to do with his condition, like encouragement at school, work, etc.

Trying to protect parents

Some young people said that they felt they wanted to protect their parents' feelings because they felt their parents worried too much. They decided not to tell their parents when they were feeling ill or depressed about their condition in order to protect them and because there was nothing they could do about it anyway. One young woman said that after her diagnosis her parents were so worried that she had to support and help them understand about her condition almost as if she were the parent and they were the children.

 

Her relationship with her mother has been shaped by her experience of having ME. She didn't want...

Her relationship with her mother has been shaped by her experience of having ME. She didn't want...

Age at interview: 28
Sex: Female
Age at diagnosis: 19
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What about your family? Were family relationships affected?

I think the hardest thing was for my mum definitely because she was like, you know, the person who had to look after me all of the time. And I think it must have been really hard for her to have her friends come and visit, you know, and I was still upstairs in bed or you know, she'd have to keep making sure I was ok. And that must have been really restrictive for her and she couldn't go out very much because I was always there. And I, yeah I definitely felt really guilty about that a lot and it, you know, I used to worry about it a lot. And I also used to get really angry because I felt like I was a little child again because, you know, I was so dependent on her. 

And then I think, like because I got more healthy and more able to go out and do things then she'd really worry about me. You know, she'd be sort of saying, 'Are you sure you can do this? You know, you must be back at this time'. And I'd get really frustrated because I was like, 'Mum I'm 22 years old. You know I can take care of myself.' But of course because I hadn't been able to take care of myself for so long she couldn't help it. She was just worried about me.

But then on the other side I think I got to know her a lot better than maybe I would have done. You know, I didn't move away to go to university. I had to stay at home to do it. So, you know, I definitely have a better relationship with her because I know her and, you know, she definitely knows me really well now. So I think in a way that was a good thing.  But you know, it definitely made it more difficult. 

And again I think some of my friends couldn't quite understand because I'd sort of say, 'Well you know I'm just going to call my mum and tell her we're going to be 20 minutes late'. And they'd be like, 'Why, you know, you're 22 years old?' And I'd be saying, 'Yeah but I know that she's going to be worried about me and I know that she's doing it because she cares about me.' And they'd be like, 'Oh, you know, my mum's always fussing over me. I never ring her'. And I'd just sort of think, well that's fine but I'm still going to ring my mum because I know she's not fussing. I know she's just trying to help me. 

And I think like that was a really good thing was having that support. You know, I knew that she wanted to help me and sometimes I did need somebody to say, 'Oi you're doing too much'. You know, sometimes she would say to me, 'You look exhausted. I know you're doing too much. Stop.' And I need her to sort of just say that and, and you know, maybe I'd need her to ring, ring somebody or ring a friend and just say, 'Actually, you know, she's not coming out today'. And, you know, I probably maybe wouldn't have been quite so strict with myself if I didn't know that she was also supporting me. And also I, you know, I didn't want to let her down. I didn't want her to, to sort of, you know, have given up all that time and all effort and worry making me better for me to then go and do something silly and let it, let her down.

But then like the other side of it was having friends who'd also had M.E. that I got to know because then I could talk about things like that with them because there were some things I just didn't want to talk to my mum about.

Like what?

I always used to really hate telling her if I felt worse because I knew that she'd worry more. So I didn't ever want to say to her, 'Mum I feel really bad today'. Because I knew that she'd get upset and she'd, you know, she'd be worrying. And also I didn't always want to tell her how scared I was about

Trying to be independent

Parents tread a fine line between being caring and loving and being seen as 'overprotective'. People who'd been diagnosed with a long-term condition as children or teenagers said their parents had allowed them to be more independent as they were growing up by giving them responsibility and not restricting them. 

 

David enjoys his independence. He asks his parents for advice but makes his own decisions.

David enjoys his independence. He asks his parents for advice but makes his own decisions.

Age at interview: 23
Sex: Male
Age at diagnosis: 2
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Over the years my family have always been there and I have got two sisters now, of course you know, there is nothing wrong with them. They are perfectly normal. So I don't know why, you know, I have got arthritis. It is just one of them things and there is nobody knows what causes arthritis. So it is just one of them mysteries. You know, it could be a bite by something. It could be I had some kind of illness  but I don't know and my sisters are perfectly normal. My family have always been there for me. You know, I mean, I have had some really bad times over the years, you know. In the hospitals, operations,  throughout my life I have had, I think it is 27 operations in 23 years. I am quite proud of that [laughs] and anyway you know they have always been there. But as time has gone on, and I have got older, I have took you know more of a control and nowadays, you know, I mean I go to the hospital myself now, to the adult base centres obviously, but I am in charge myself now obviously. When I am in hospital they have to be there for me. But nowadays I take all my medication, all of my appointments I go by myself, but obviously when you are younger you can't do all that by yourself so you rely heavily on your family and I can't fault them in that respect. 

What do you think what the main factors that influenced that? I mean apart from your attitude to it.

Well it was always a plan in my mind to get my grades, to go to college, to go to university. That was always the plan right from when I was a teenager you know to get as many qualifications as possible to allow me to get a better chance of getting a job. But you know my family as well I mean considerably they pushed me, not pushed me as such but it was for my own benefit. Do you know what I mean. And obviously I have got my qualities myself but I have got those from my parents. If they wasn't there to push me along then I probably wouldn't have, you know what I mean, I can't say what I would or wouldn't have done but it would have been harder to develop myself, but I have always had the support of my family.

Are they protective or not?

No. I wouldn't say over protective. I mean because I am older now, I take more of a control in my arthritis and the medication etc. I mean they don't know what is happening so occasionally they ask or they want to know and you know if something isn't quite right then they might say. But at the end of the day it is my decision now. Now since I was 18 it is my decision. So in that respect. I mean I can ask them for advice, but ultimately it is my decision. It is my disease, it is my body. You know I am not a child any more. So nowadays you know, I have to take control and I like taking control. But I wouldn't say overprotective. I mean I am close to my family because of that time I spent in hospital etc. and you know it does make you closer. When you spend so many hours in hospital, so many days, weeks, months, you know you are with someone so much, so you are going to be close to them aren't to them. So I am closer to my family then probably your average 23 year old. You know but that is fine. Nothing wrong with that, you know. But nowadays I do have a lot more independence because I am older, I mean, when I was a teenager as well we didn't have just a house, things round the house, we didn't have like now, up until a few years ago I couldn't even open the front door but now we have got that in place so I can you know, open the garage now at the push of a button. So things like that, you know, I have got lots more control now then I had when I was a teenager. The house I am living now it is more or less built for me, you know, I have got a walk in shower. I can do that myself. When I was younger I had to have a lot of help. You know
 

Says that her mother became less protective and more understanding after she herself was...

Says that her mother became less protective and more understanding after she herself was...

Age at interview: 17
Sex: Female
Age at diagnosis: 6
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My mum's got diabetes she's had it.

Type one?

For the past two years, yeah type 1 and but we didn't actually know anybody went, had diabetes in our family until I was diagnosed and then a few months later we found out that my mum's cousin had developed diabetes type 1 as well, and  [eh] about four or five years ago, my mum's aunt also developed diabetes so we've kind of got the impression that it comes from her side of the family [laughs].

So your mum developed diabetes after you?

Yeah she developed it about eight or nine years after me, and, she took, I think she kinda gave me the impression when she got diabetes that she wouldn't have got, she wouldn't have understood the diabetes as much, if I hadn't have had diabetes because they, they do tell you that you're gonna have hypos and they're gonna happen like this, but they don't really say well you're actually gonna feel really bad and you're gonna feel very, faint and you could feel really hungry or you could feel really empty and, they sort of suggest that you might do but linking it together is a whole different thing from reading it.

So you talked '

So.

'a lot with your mum'

Yeah.

'about it?

She, in the past she was very worried incase I'd have hypos in the night and things like that, and she actually used to get me up and two in the morning to test my blood sugars [laughs] and sometimes it'd be the only time that I'd do my blood sugars, which was, that was when it was really bad but she looked, she tried to look after me but you don't wanna be woken up in the night and find out that you have blood sugar the six and you're mum's worried that you've got blood sugars are three instead and is trying to feed you all this food [laughs], it's not nice to have a bowl of cereals in the middle of the, the night and then have to have breakfast a few hours later, so I think it made her realise a bit more about the diabetes.

After your mum was diagnosed with diabetes did you notice sort of, kinda any change in her about your diabetes?

She became a little more, less protective she used to be really protective and I think she kind of realised I am grown up now and I've known how to deal with it all my life and, I've got used to having the hypos, I've got used to having the highs and, in a way I'm better off because I, I know, I get an idea what my blood is most of the time and I think she's realised that when I was having these really bad lows when we were out walking that it took me a little longer than five minutes to recover from them 'cause it's supposed to take about forty-five minutes to fully recover from a hypo which is where your blood sugar's low and it was before she was kinda like, 'Well you sit there for five minutes, eat this chocolate, eat this biscuit and well, have this drink and have this biscuit and we'll, we'll be ready to go in five minutes time and...' She's kinda realised that you still can have shaky legs from the hypo like five, ten minutes later, twenty minutes later so, I think she's kinda realised that I did know what I was talking about all these years and it wasn't just that the doctors said, 'Well this is gonna happen'. And it didn't happen sort of thing so.

 

She says that because her father has epilepsy, her parents knew what to do and she wasn't...

She says that because her father has epilepsy, her parents knew what to do and she wasn't...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Yes I mean because our family knew a lot about epilepsy because of my dad, it was maybe different to it being a completely new thing. So my parents were good in that respect in that they already knew what to do, you know, if somebody had a seizure for example. And they were very good in that they didn't try to protect me or overprotect me. You know, like I said, I still went to school, I still went to parties, I still went swimming or rode on my bike for example. And I think partly that's because my dad had grown up with epilepsy and my dad had done all of those things and, you know, had a regular job and, you know, did, did all the same activities as other people. So they didn't try and overprotect me. Which was really really good. I think the fact that they said, 'Okay, it's, it's okay for you to do these activities' made me think, 'It's okay for me to do these activities'. If they'd worried and voiced their worries, then maybe I would have worried more.

Alcohol often caused disagreements at home especially if the condition (e.g. epilepsy) could be triggered by alcohol. Several young people said they felt that their parents got too wound up about alcohol and didn't seem to trust them to be responsible about it.

 

Says that his mother still worries a lot about him especially when he goes out with friends.

Says that his mother still worries a lot about him especially when he goes out with friends.

Age at interview: 19
Sex: Male
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Yeah my mum is kind of overprotective of me. She doesn't really like me staying out too late and but apart from that you know she, she doesn't really stop me doing ' I can you know I do ' I try I try not let my sickle cell get in my way. I just try and live you know and ordinary life and everything so I still go out and everything.

What are her concerns?

She just does ' she ' me being a teenager she doesn't want me to do you know do anything silly or just do something that would get myself hurt or things that I know I know my friends can do and not have to wonder about.

Like what?

Like for instance she doesn't like ' like I said before alcohol ' she wouldn't want me to drink. And even though I've never suffered from it but it could catch up on me. She wouldn't want me to drink and then I'd become ill. While if my friends were to drink, they wouldn't become ill there you know. So she you know she's very overprotective and she just other things like sports and stuff yeah. 

Yeah. Not really with that and she know that ' me what she know that I don't really not that I don't you know pay attention. But the fact that now that I'm older, I'm maturing she doesn't ' I don't really pay attention ' I sometimes forget that I even have sickle cell. And she tries to remind me like I couldn't do silly things at times like you know just I'll forget to take my medicine for a long time. And then you know I could ' something could happen to me and then she would you know have to go out of her way to make me better and everything. So she always trying to like you know just stay safe and put me in the right direction so I can do the right thing, yeah that's it really.

Sometimes concern and encouragement from parents was seen as quite harsh. Several people said that their parents had made them exercise when they felt tired (see clip below), or had made sure they kept up their school work, but looking back they thought that their parents had perhaps been right. 

 

Her mum can be quite tough and makes her take exercise during attacks (she has sickle cell) but...

Her mum can be quite tough and makes her take exercise during attacks (she has sickle cell) but...

Age at interview: 17
Sex: Female
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What do you think has helped?

My mum. She's, I don't know 'cause she was brought up in Liverpool and they were very strict with her and they just told her to get on with anything. Do you know? So when we have an attack sometimes it does help when she says, 'No come on, get up. Do some stretches. Go to the shop for me.'

And you think, 'Oh my days what is this woman putting me through like. I've got like a big pain in my chest and she wants me to go to the shop.' But it does help. It definitely helps with, without a doubt, without a doubt. Yeah. And so when we have attacks, maybe she might let us off for the first week, first two weeks or the first, first week and when it gets to the second or third week then she's like, 'Oh go to the shop for me. Get up, do some stretching.' Otherwise if you're just sitting there and you're just lying there watching TV all day your body will get stiff and won't be able to move. So yeah even though it takes you like two hours to walk to the shop and back because your legs are in pain and you're thinking that you're going to die but it helps a lot, it helps a lot.

One man diagnosed age two with arthritis suggested that although sometimes parents can be overprotective, this can be beneficial later on. He said that he had learnt from his parents how to look after himself as an adult dealing with a long-term condition, i.e. asking the appropriate questions to doctors, being forceful and getting things done.

Relationships with brothers/sisters

Some of the young people we talked to had been diagnosed in early childhood and said that their relationship with their siblings had definitely been affected by the illness. Brothers and sisters could feel neglected by their parents because they were giving the child with the long-term condition too much time and attention. Many young people in this group said the situation improved as everyone grew up.

 

Says that it must have been difficult for her younger sister to understand why they were given...

Says that it must have been difficult for her younger sister to understand why they were given...

Age at interview: 23
Sex: Female
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And that treatment was. Obviously it was primarily done by my parents and I do think that it was something that they found really hard to adapt to particularly as my mum. I had another sibling who was younger than me and she was non-CF. And she would get very jealous at all the time that was spent with me doing my physio and she. She would get upset when my mum would give me lots of high-fat foods and then she would have to have an apple. Which does seem rather unfair but you know,  trying to explain to a three-year-old and a four-year-old why you're doing that is, is quite hard. And I think it was a really tough time for my mum.

And what about your sister? 

She didn't really help out with treatment to be honest. I think people sometimes imagine that she was very hands on and trying to help with physio and things. My brother when he was born, he's quite a few years younger than me. He actually used to get physically upset when my mum used to do the physio. And she used to tap me on the side and he used to start crying because he thought that she was hitting me [laugh]. And again trying to explain that to a child, 'No I'm not hitting her'. It got to the point where we had to take him out the room. I mean as he got older and he could, he was maybe walking around they would actually encourage him to help my mum do my physiotherapy. But I can remember him being ever so traumatised. He didn't, you know he, he was very much you know, very sensitive to that sort of thing.

And obviously with young children around as well I had a responsibility to make sure that my tablets weren't lying around which. When my brother was born I was about seven years old. And that's quite a big responsibility for somebody of seven, to know to  tidy up after yourself. Make sure that your tablets aren't lying around. And obviously my, my mother was doing exactly the same but boy I'd get into trouble if my, you know, creon was laying around. You know be like, 'Oh he'll have, you know diarrhoea for a week now', you know [laugh]. And obviously you know, you wouldn't wish that on your worst enemy. 

But I do think there was a lot of competition with my sister. It certainly affected her more than my brother. I don't know if even it was the age gap because she was only a year younger and he was quite a bit younger. I think that she, she was constantly competing for attention. And all the time that was spent with me wasn't necessarily attention. It was all CF, CF, CF. 

And I actually felt the other way around. I felt like the only time I ever got attention was for my CF and never for anything else. And she [laugh] was thinking, 'Well she always gets the attention because she's got CF. But in saying that we were very close but so close that we would argue and bicker a lot. And my mum would always say things to my sister like, 'Oh she's very tired. You know she needs to go to bed' and things. And [laugh] when we used, got to the age where we could do the washing up my mum actually used to say, 'Right Lindsay's going to do, go do her physio now [laugh] and you can start on the washing up [name]' you know. So she, my sister was actually in some ways punished for not having CF because to my mum doing my physio she could see that that was a chore for me so she would then send my sister off to do another chore  which would be unfortunately for her washing up. 

So in some ways I felt a bit cheeky like I got out of certain things. And I could, not, not in a manipulative sort of way because I was never that sort of child where I would use my CF to manipulate my parents but certainly my mum quite did that on her own. That she did feel that sometimes I wa

Others had a completely different experience and described how supportive their brothers and sisters (often older than them) had been. Several said that their siblings helped with their home treatment and knew when they felt bad. 

 

She and her younger brother have sickle cell but not her sister though she says that her sister...

She and her younger brother have sickle cell but not her sister though she says that her sister...

Age at interview: 17
Sex: Female
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My brother and I, my younger brother he has sickle cell and my mum. But his twin [names] she doesn't' have sickle cell. She's the only one that doesn't have sickle cell.

Do you talk to your brother about it? Do you explain to him what he needs to do and?

Yeah knows what he needs to do. Yeah he's 14 so he knows what's going on and how to control it. At times it does hurt a lot so it's like, 'Oh I'm going to die and the pain is too much. I just wish I was, like I was dead and'. But sometimes he, you know, you just have to encourage yourself and say, 'It's going to work and just try and help yourself'. Yeah.

How was it when you were sort of growing up because with several members of your family having sickle cell and perhaps if you feel ill and have to go to hospital and.

If someone else.

Yeah.

Yeah like my brother or my mum. She doesn't really. When my mum has attacks it doesn't, it's not noticeable. She could be cooking, cleaning and driving up and down and then we'd be like 'Yeah'. And she'd be like, 'I've got an attack in my shoulder or my chest'. And we'd be like, 'Oh ok we didn't know that'. She doesn't really dwell upon it. But with my brother obviously because he's younger he'll go to a hospital and it feels, you just want to take the pain away. Like you just want to do it yourself. You'd rather have it upon you than him. I don't know probably because he's younger and it seems to hang on and on. Like he does, it. Sometimes it makes you cry 'cause the pain. And you look, because you know how the pain feels and what he's going through. Its like, 'Oh. You just can't handle it so you just want to take the pain away.

Ok. So you feel for him?

Yeah definitely feel for him.

When, how is he managing at the moment?

Oh he's fine now. He hasn't had attack, he hasn't an attack for about two, three months. Three months. But before that he hadn't had an attack for like a year. But now it's getting to winter and everything it's. We have to wrap up [ha].

Ok. So you, you and your brother and your mother participate in support groups.

And my sister.

And your sister too.

Yes. Even though she hasn't, she doesn't have it but she comes along to the meetings and stuff. And now that she comes along like even though she don't have it but she comes along to the meetings. It gives her more knowledge about, about sickle cell. So she, if we have an, an attack and we're not really thinking straight then she knows that, 'Misha you have to do this to get better'. And I'd be like if I'd have an attack. Because sometimes when you have an attack it's like some times you don't really think straight 'cause it's, you're in so much pain that you just don't give a damn. You just want to, you know, just do something to make the pain go away and stuff. And so it's good to have like my sister there even though she doesn't have sickle cell to say, 'Misha you need to do this'. At the time you think, 'Oh shut up man you don't know what sickle cell feels like so how can you tell me to do this'. But when you humble yourself and you do it and it does, you realise that it does help. And you say thank, I say 'Thank you for helping me and'.

What does she need to do when you have an attack?

Like I might have an attack and she'll be like. She'll get me diffe
 

Says that his younger brother has not seen much of their mum over the last few years because she...

Says that his younger brother has not seen much of their mum over the last few years because she...

Age at interview: 16
Sex: Male
Age at diagnosis: 11
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Yeah the one that is eleven, he's called [name]. Because Mum's had to spend so much time with me he's, he's not known, he's not had Mum in his life since he was like six. You know he's not seen very much of her. So I don't I think it affected [name] too much, the fourteen-year old. It didn't affect him too much. He was eleven, he was coming up on ten when it happened, when I first got sick. He was nine and a half. So it's like, alright. It's not too bad. And you know it's just tiring. You know because I'm up at the hospital all the time and my brothers sometime have to come with me. And driving up and down and going on trains and stuff, it's just tiring. And it's annoying when things go wrong.

Last reviewed July 2017.

Last updated February 2012.

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