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Long term health conditions (young people)

Dealing with feelings and emotions

Being diagnosed with a long-term illness at a young age can be particularly hard. Most of the young people we talked to felt it was unfair and often wondered 'Why did it have to happen to me?' Some medications have side effects that can affect both the way you look and how you feel. Pain or physical problems meant that many were not able to do the 'normal' things that young people wanted to do (see 'Pain and physical problems'). This left them feeling alone, frustrated, angry, anxious and, in some cases, even depressed or suicidal. 

 

Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

Age at interview: 23
Sex: Female
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How do you feel about having sickle cell?

Sometimes you can just, every day is fine. You don't even know that you have it because you don't feel any pain. You don't feel anything. And then sometimes you're just depressed because you get ill and you have to take this medicine or you know, you'll be doing something then you get a pain and you're like, 'Oh here we go'. You know where it's very, very painful. So sometimes it can be a bit depressing. And, but I think what I've learnt from my mum is just not to let it hold me back. So it's quite hard to have been in bed for like a week and then all of a sudden get up and leave the house when you've been indoors for, you know, a whole week. It's quite daunting like back in the real world kind of thing but. So that's the only downside really.

I think the most important thing is not to hold yourself back. To not be afraid to do what you want to do just because you have sickle cell or you have anything because then you're not living your life. And there's no reason why you can't do what everyone else does. You just have to know your own body and know that just to keep yourself warm or whatever you know that causes you to be ill just make sure you're taking care of that. And you can just do what everybody else does.

When you are ill does it sort of emotionally kind of affects you, the fact that I've got to have to stop doing what I'm doing and have to look after myself and then? How do you feel around that time?

It's quite depressing sometimes because you just feel like you're missing out on life. Like you're stuck here. You can't, you can't move. You can't walk. You can't. You know, you lose your appetite and you just stop watching the tele all day which is sometimes nice to watch the tele all day [laugh] but not when you've got pain. You know you'd rather be out doing something else. You know everyone else is carrying on with their lives. Sometimes you feel like people don't understand how it feels. But yes it can be quite depressing.

 

Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her...

Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her...

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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How does it make you feel to have epilepsy now? 

I would much prefer to be normal and not have it. Just to be able to go out and to be able to drive. I mean I was free for a year and I so wanted to drive. But then I started having fits and I couldn't. But yes that was a bit of a...

Okay. 

Be normal would be nice.

And do you know under which conditions you can start again your driving lessons? I mean if you are free from fits for six months I think or a year?

Yes. It's a year.

It's a year, okay. But it doesn't make you feel sad or frustrated?

Yes. I mean it can. I mean the memory side makes me feel very frustrated. I mean you want to remember like holidays and things and my mum brings them up all the time and kind of why don't I remember it.

So you don't remember much beyond your ninth year. That is the case.

I don't remember anything from like last week [laughs]. I don't remember anything really.

But you remember. There are bits and pieces'

I have bits and pieces things that kind of stand out here and there, that kind of stuck with me, but only little bits and pieces.

And that is all?

That is all really.

I have kind of found out recently that - I have done a questionnaire with what ' some tests that I did at [name] that I am really am not as happy as I was say about nine, before I was diagnosed because I just don't have those memories any more. I am just not as happy. I don't remember what it is to be happy. Kind of, I find it difficult to be really really happy. I can of put on a false smile anyway sometimes when I feel like I should be happy. For obvious reasons that I don't know it is kind of my birthday or something.

 

She felt isolated when she was not talking to anyone about her epilepsy.

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She felt isolated when she was not talking to anyone about her epilepsy.

Age at interview: 19
Sex: Female
Age at diagnosis: 16
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Can you tell me more about it?

Well, I think it was, it was sort of like partly to do with feeling isolated and not having anyone being able to actually really understand how it felt. Like I didn't feel like anyone could understand me. I felt really quite alone. And I didn't talk about it with many people at the time, like I have done since. But at the time it really, it really isolated me and I felt like a bit of a freak. And I didn't want to talk to people about it because I didn't want people to know. And, yes, I was just, it just made me really unhappy and I felt like I couldn't do what I wanted and that I was going to miss out on all, on this big part of life. I don't really know what I thought I was going to miss out on at the time to be honest, but I, that's how it, it made me feel like I was going to miss out on life. And like again with the drug taking, like because I wasn't going to be able to do that, I was like, 'Oh, you know, all my friends are going to go off without me and do what they want. And I'm not going to be able to do anything'. And in a way it was a bit pathetic actually. And I look back and I'm like, 'God, how stupid was I to think that'. Like really, you know, I just needed someone to give me a good slap and tell me to pull myself together. But, you know, at that age I don't think it would have helped. No one could have said anything to make it any better. Because it was, I had to come to terms with it myself. I had to accept it. And I didn't accept it for, you know, a good year I think. And even after that it was still a bit, like a bit hit and miss. Sometimes, some days I'd feel okay about it, and other days I'd feel like shit. And angry as well. Like I felt quite, I think it, the depression was like a mixture of feeling alone, unhappy and, and also really angry that I had, that I had this. It was like, 'Why? Why, what have I done to deserve this fucking annoying illness that is going to like plague me and ruin my life?' Because that's sort of how I looked at it is, I really thought it was going to ruin my life.

And, yes, not talking about it was definitely not helping. And I wasn't, I think they, I think the doctors gave me a leaflet for Epilepsy in Action, I think it was. And they were like, 'Oh, there are support groups. There's this, there's that'. And that was it. But I don't remember anyone sort of saying, 'Right, I think we'll make you an appointment'. You know, because at that age you don't, you're not going to seek help. You're not going to go, go, 'Oh, yes, I'm going to go and join the support group'. Because a) it makes you feel even more like a freak and, you know, 'I don't need a support group. I'm fine. I'm an adult' you know. Hell, no, you're not. You're a child at that age. But you think you're an adult and you think you can cope with everything and you think everything is going to be fine. And it's only, it's, it's only like after it's happened and after I'd been through all that, that I could look back on it and think, 'Shit. Why did I not go to any of these things? Why didn't I go and see a counsellor about it? Why didn't I go to the support group?' Because probably if I'd have done those things I would have understood it better and probably not felt so unhappy about it. Because you do get a bit of a, 'Poor me' like, 'Oh, my God, my life is so bad' you know.

 

She was angry with her body for causing her illness and went through a very down period in which...

She was angry with her body for causing her illness and went through a very down period in which...

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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When I was first diagnosed I found it quite hard to take in, because I think 'Ah this is me.' Because you think well that will never happen to me really. You think that about everything but then when it does you know it really hits home and you think 'Oh God.'  I did get very upset, I tended to get upset quite a lot in the evenings, I'd go sit in my room and have a little cry and think 'Why me?' you know. And I did find it very hard to start off with, I found that I could tell my Mum certain things but she would get upset as well, which would then upset me even more, it was just a vicious circle but I did have at one point a very down time where I did start self harming myself, I'd be very angry and that was the only way I could, I think I thought that was the only way to get rid of that anger and I soon as I done it I realised it wasn't helping at all, I didn't tell my Mum but I'd write her little notes, I'd just like write a note explaining how I was feeling and give it to her, and I'd let her read it and I'd go off and then she'd come and talk to me and I found that that was a lot easier than telling her face to face. Because I've always been close to my Mum and I've always told her everything, but I found that a lot harder to tell her, but she was very understanding about it and she helped me through it a lot, and I think I self harm myself about three or four times and I then, she really spoke to me and you know she told me that if there was absolutely anything that I'd got to talk about, even if it upset her, then I was to do it. I also had, well I had two really good friends at that point, and they helped me as well. So I ended up, I got out of that, and got that put behind me, and then I was doing really well, and then when I went onto dialysis I found that quite hard as well. You know, I do everything since I was little you see all these programmes on telly, all these you know documentaries, and I was always, there was always one that sticks in my mind, I remember seeing two little girls, they couldn't have been any older than six, and they were both sat on dialysis and I'd always said to my Mum I hope I never have to do that, and that was the one thing they'd said, give me anything else, but don't make me be put on dialysis. And so when I was I found that really hard and I was angry at myself because it was my body that had caused it, and I think I got quite angry at the consultants that even though it wasn't their fault there wasn't really anyone that I could take it out on. I do regret, I think I was quite grumpy towards them at some stages, but I mean, after a while of being on dialysis I did tell the nurses quite a lot of things and they'd helped me as well. I managed to control my feelings a lot better, and I was a lot happier for a while then when they came up with transplants, that really you know boosted me and make me think, 'Yes, you know, I can do this. You know I can see an end in sight if everything goes right.' I think at that stage I was just before they said about transplants, I was looking at some of the other kids who were on dialysis and they'd been on it for quite a long time, some of them had been on it for like five or six years, which made me wonder you know am I going to be on it that long? And so then when we got the results through it was just like a huge weight lifted off my shoulders, and it was a big relief knowing that you know I was lucky enough to have my Mum who was a match and able to give me a kidney, and throughout the few months after having the transplant, I was on a high the whole time really, apart from the little bits of rejection, they got me down. Because the thought you know of rejection that's not a good sign, even though it was a match, it was still a risk that you know I could reject altogether and lose the kidney, but, I mean the medication that I was on after my transplant should've made me really grumpy, but I was quite lucky that it d

Many young people with long-term conditions said that they always felt different from other teenagers because they couldn't do the same things or because they were very conscious about the way they look. Some people who'd had their condition all their lives said that because they had never known anything different so they did not feel these problems as strongly. 

 

He remembers feeling different to his peers in primary and secondary schools because of his...

He remembers feeling different to his peers in primary and secondary schools because of his...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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At primary school I can't. I wasn't really aware of social peers or anything 'cause I was only ten. But I can remember feeling different and feeling different from everyone else because I couldn't, you know, walk and I was in a wheelchair.

At high school I was much more aware of my social peers and I was walking differently so I felt different. I had to have my timetable changed so I was in downstairs lessons. So I had to join a new class which was strange. And for my classmates it was strange because they'd never know anything about arthritis or seen any children with it. So it was very strange for them as well. It was a new, new thing but, you know, people came to accept it and I didn't suffer any bullying or anything. People were just aware of it and got on with it really.

But you felt different?

I felt different.

And any other feelings? Were you frustrated or angry or sad '

I got very frustrated that I was reliant on people. I liked to be independent. Do my own things but I was very frustrated especially when I was tired, waking up at night. And then coming home and just collapsing on the sofa with tiredness, you know. It's very frustrating just not having been able to do what you wanted.

Have you talked to anybody?

I talked to my grandmother and granddad a lot and my dad and my mum when I was really poorly. So I used to just cry, and I was in so much pain didn't know what, what's wrong with me. Didn't understand it so I used to get really angry and talked to them a lot. So.

You said you got angry?

Yes. Why am I like this? Why am I sat here and I can't do anything? Why can't I do this? Used to get angry, upset, frustrated, frustration more than anything.

Yeah. That period in which you felt like that was kind of, it lasted as long as the pain lasted or?

It was mainly when I was in really bad pain and I just wanted to be out of pain and didn't want to be sat there and didn't want to be in pain. Just wanted to be normal again. I used to get really angry and upset. And I think it was tiredness as well. Just a build up of everything getting on top of me.

 

He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal'...

He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal'...

Age at interview: 23
Sex: Male
Age at diagnosis: 2
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When you were growing up, mostly when you were a teenager did you think why me?

I don't know really. Because I have only had it since I was two, I mean I don't know any different. So in effect I have never been in the playground playing football. So you know, I have never experienced being normal, although I am normal in lots of respects you know. I am not you know, I can't run around and play football. So in that respect I have never experienced that. So I would say that what you don't have you don't miss. So because since I was two, you know, I mean it is not like, there are people out there who have been non disabled up until they are 12, 13 and then they have become disabled so I could imagine that would be quite hard. Because you have had all those years of normality and you have grown. I mean I have never really grown because I got it when I was two. But there are people out there I know that have become disabled at 12, 13, 14 so they have had that chance to grow, they have had that chance to interact with people and then they have become disabled. I could imagine that that would be very hard. But I don't know what it is like because I don't know. But in that respect you know, I think, I don't really say why me. Because in a way I don't know any different, you know. So it is hard for me to look at someone and think oh you know, I would like to be like that because you know I can't really put myself in that situation.

 

She used to feel different when she could not join in activities because of her sickle cell....

She used to feel different when she could not join in activities because of her sickle cell....

Age at interview: 17
Sex: Female
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Did you or have you ever felt different to other kids because of  your sickle cell?

Yeah. I remember a time when we went on a school excursion or should I say trip, we went on a trip. We was there for about five days to Swanage. And then I had to take my medication in the morning and at night. And there was like, 'Oh why you take so much tablets?' And I was just, 'Because of my sickle cell.' I explained to them. But I remember couldn't go to swim, I couldn't go swimming in the sea either 'cause it was really cold and it was during the winter that we went on the trip so I couldn't go in the sea. So I had to stay in the cabins and, and they were just, they were quite surprised actually. Yeah. And I mean it, it does make you feel different, sometimes special at times but not really special. Yeah.

Special in which way?

'Cause sometimes, if some people feel sorry for you and then they, you know, do things for you and make you feel a bit better with yourself and stuff.

What does it mean, normal, to you? What do you mean?

Normal is just like you don't have any worries and. I know people have worries but I'm talking about in sickness and in health like we don't have cancer or you don't have sickle cell, you don't have asthma. You just maybe you might have a weight problem or something but that's normal, do you understand. People are fat, people are thin, people are slender. It's like but normal you just don't have anything. You're just there. You can do what you want. You can go swimming in the winter. You can, in the winter you can wear a T-shirt. You know, you might be cold yeah but you won't, nothing will happen to you. You might get a little cold and a sniffle but that's not really anything compared to sickle cell and cancer and stuff.

Living with a long-term condition can make you feel down, lonely, different and depressed. It is perfectly normal to go through those feelings even after years of living with a condition but it can be particularly difficult for a teenager because they naturally tend to experience more mood swings and may not find it easy to talk about feelings. Sometimes schools and services don't seem geared up to support young people who have long-term health conditions. 

 

He felt excluded and lonely when he was having treatment at boarding school and eventually became...

He felt excluded and lonely when he was having treatment at boarding school and eventually became...

Age at interview: 16
Sex: Male
Age at diagnosis: 11
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Then the housed decided. In Year 8 they decided to put me with four people. Three other people in a, in a room they decided, oh it was ok. And I just kept getting peritonitis after peritonitis, keep getting infections. I kept getting ill and I kept more absences. So what they decided was. They stuck me in a room on my own but it was a lot worse than the first time I was in a room on my own because now no one was allowed in my room when I was in there. So I was always on my own because no one else stayed in after school to do homework. They took it home with them but I stayed in after school because I did catch up lessons. So I was alone there and I was alone, I was alone in. The only time I saw my friends was at school in the actual lessons and everything got a bit much. 

So I figured if I'm in [name] and everyone else, the hospital, the nearest hospital is an hour away and that's in, that is with no traffic I could stop having my dialysis and, and die and no one could stop me. 

So I told my mum. I said, 'I'm not doing dialysis anymore'.

What made you decide that?

Well for about'

Why?

'well for about a year I'd seen none of my friends. All I was doing is work and for doing all this catch-up work and stuff I still get, I still got shouted at by every single teacher.

So you weren't happy?

Oh no I wasn't happy. In fact what I'd done was. This is very clever but I can actually block off all emotion when I can, when I, when I have to. Mostly it's when I'm scared of needles and stuff 'cause I'm terrified of those things. But I generally just shut it off and then there's only pain. And then you can just shout through that. It got to the point where I just wasn't bothered. You know, I figured what is the point in me doing all this work when all I do is get shouted at, you know. 

So I told my mum I was quitting. She was up that night, picked me up. And I think that was at the beginning of Year 9. Was that 2000 and, or was that in the middle of Year 9? No that was in the middle of Year 9 in 2005. And I went to. I came home and I got better. I got to see some people that I knew and.

Were you telling anybody?

No I didn't want to worry anyone.

So you were going through these on your own?

Yes.

Ok. Why?

Which is apparently what drove me to suicide, you know, or something. 

 

Enjoys playing football and finds it frustrating if he is not able to play at school.

Enjoys playing football and finds it frustrating if he is not able to play at school.

Age at interview: 15
Sex: Male
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What does it mean good mood?

If, say if I'm like happy I just want to have a cycle around. If I'm like up really in a bad mood I just don't want to go outside for a whole day.

So bad mood means what?

You don't go outside, I don't want to go outside.

Would that bad mood mean you're not that happy?

Yeah.

What things make you not that happy?

Don't know, really don't know.

And what things make you happy?

Seeing if it's a blue sky and football. I just play around with my Diadora football, kick it against the garage for goals and use my sister as a goal keeper and my mate comes round and has a kick around as well. So he, so he comes and has a like kick around with the football. And we just have a kick around until latest. And we just swap round until final goals and then he goes home afterwards. And then we just, and then I just come back in afterwards watch a bit more tele and then go to bed.

How does it make you feel to have this condition, to live with this condition?

Hard. Hard because I can't do best things. Can't do best things like football and hockey and netball.

Ok you would like to do those. Ok.

Yeah.

Ok. So it's more to do with the sport, with physical activities?

Yeah.

How does it make you feel not to be able to take part in many sports or activities at school?

Well mostly if it's like footie on a Thursday or footie on a Wednesday it's usually. We all get into a massive line across the pitch and there's like six people, six or eight people as captains and they go' one, two, three, four, five, six. Go to your eight things, eight six. One, two, three, four and so on until it's ended. And there's one left that's me. You can't play. 'What'. I was like that. It's I want, it's not fair on every, it's not fair on me. Everybody else to gets to play football except me. Because I like football, I love football and it's just not fair on everybody. It's fair on everybody else but it's not fair on me 'cause everybody else gets a good game and it's not. It's doesn't but it doesn't, it doesn't let me play.

Ok so it gets a bit frustrated.

Yeah frustrated.

Some young people have had to deal with knowing that their life may be cut short by their illness. For example, people with cystic fibrosis (CF) often find out when they are teenagers that the average life expectancy for someone with their condition is about 40 years old. (This means that according to the statistics "Now half of those with the condition in the UK will live to celebrate their 40th birthday, and a baby born with the condition today can expect to live even longer" - Cystic Fibrosis Trust July 2017). They initially felt shocked and in despair and some thought “What's the point?” and temporarily stopped taking care of themselves. One young woman with CF said that she had then started to think that the “average is just an estimate” and became determined to live to a 'ripe old age'. Family, friends, doctors and nurses could all help people to come to terms with having a limited life expectancy. A young woman who used an internet chat room liked being able to tap into the experiences and wisdom of other patients without having to talk about her emotions face to face. 

 

Had a hard time when she found out about her life expectancy but found talking to other young...

Had a hard time when she found out about her life expectancy but found talking to other young...

Age at interview: 21
Sex: Female
Age at diagnosis: 4
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Have you talked to the doctor about any concerns regarding life expectancy and things like that or have they told you about it?

That was probably one of the biggest things that I've had to get my head around because they don't really tell you anything like that, apart from there was once when my consultant was away, and I had another, I think he was like, another doctor came in, and he sort of blurted it out, and I'd never really been told about it. And again I was about 14 or 15, and he sort of blurted it out, and it was the first time I'd ever been told it, and it was, that was quite awful to hear, and everybody knew, everybody could tell, at the time, that you know, I wasn't expecting it, and that was quite a big thing for us to deal with you know, I wasn't very good at you know, going to my mum, and talking about it to my mum because I didn't want to upset her, and I didn't want to upset my family, so, it was quite a difficult time, maybe mid teens, when I was sort of like 'Oh no' like, 'What have I got to look forward to?' and things like that, but, it's just one of those other things that you know, it's always so been in the back of your head, but you never really hear it, so it was quite difficult to get over, but you know, like being, and the net's quite a useful thing, and you can talk to people, you don't have speak to people face to face, you can talk to them about it, and you can hear different stories from people so, that really helped us, that's probably what got us, got us through that sort of thing, people who understood what you were going through and '

People the same age as you and with the same condition?

Yeah, well if not older, so, or younger, like you'd speak to people who are young who are going through what you went through, like, oh you know 31 and am I really not going to live past 31? And you know, it's awful, because you think to yourself, 'Oh, like these poor people,' and I went through that, but as long as you sort of talk about it, and get in touch with people and realise that you know, it's an average its not, like, its not a sentence, so, that's probably quite an important issue that a lot of people with CF would have to cope with.

And for you, I mean what helped was to be in touch, with through the net, with other people?

Yeah. I didn't really let a lot of people know, like around us, I didn't let a lot of people know that it was bothering us, but through, just the phone on the internet and forums as well were really helpful, you just post like a message, and like say your concerns, and then you go back maybe a day later, and they'll be five or six people who, who've like says you know I've been through this, and you've just got to realise that you know, take each day as it comes, and, like you used to just get like letters of support coming back and it's a lot more helpful, because if you feel like you can't talk to people around you, it's just that, a little bit more than like a resource that you didn't have.

 

After she finishes her degree, she plans to do a PhD and her goal is to become a university...

After she finishes her degree, she plans to do a PhD and her goal is to become a university...

Age at interview: 21
Sex: Female
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I've known people that've been very similar to me, possibly they've getting a chest infection and then six weeks and they've passed away and they've died. So I do know that it is, it's, I think it's the luck of the draw sometimes and the infection, you have to catch it early and'

So the infection is something that you need to look for?

Yeah you have to be, I think as soon as you get something, go and do something about it. But then you can't always predict if the treatment is going to work.

I don't actually dwell on it. I just do what I want to be doing. I mean, I think probably when I was in between 14 and 17 I was a bit like 'oh, sod it' [laughs], 'I'm going to do what I want', and probably was a bit more detrimental that I should have been, and then it was like 'Oh it's not as bad as I thought'. I think at the time I had people telling us, that you need to do this, you have to do this and you know, you're not going to live as long as this, but then, as I came out of that like time, and I was like, well actually, I'm not as bad as I could be, I'm doing quite well, and this is what I want to actually do and go to university. I do eventually want to do a PhD and lecture at Uni, so, I want to be a ripe old age [laughs].

What motivates you to look after your conditions?

I want to be a lecturer [Laughs].

You want to be a lecturer?

Yeah, I want to do, I want to travel around and do things or'

So you want to keep healthy?

Yeah, and I know for what I want to do that it's going to take a time, because I've got to finish my degree, and then it's a three year PhD, so to do that I need to be healthy.

It is kind of, you go through that teenage stage and it is awkward, but when you come out of it and you've decided what you want to do with your life it's getting, knowing where you want to go, and just, and doing it. And not letting CF stop you. Basically, just going out and doing it. It does have its downturns where it will affect you but, you've got to try and not get negative about it, just keep positive.

What would help you to keep positive?

People I know really, people I know that kind of inspiring us, saying, 'Ah, he'll being saying this, have you done that, and do you want to do this'. I think it's my own personal drive that I wanted to do this, so I've got on with it, and I've done it.

And people you know like whom?

Doctors, nurses, my family, my friends, things like that. People saying that I'm helping them, like, 'Wow', the worst words in the world, 'You're so brave', you just say, 'Oh shut up' [Laughs]. I am not brave I just want to live a normal life really, just get on with it. Brave is a horrible word, never use it.

Learning to be positive

Young people also talked of approaching these differences in a positive way. Some see their condition as making them more mature and emotionally stronger. They talked of 'making the condition work for them'. One very important way of feeling (and staying) positive is to focus on personal objectives such as holidays, friendships, looking after yourself, completing your schooling, going to university or competing in sport events. Having a series of goals to focus on can be really helpful in overcoming problems.

 

She felt depressed for much of secondary school but has now learnt to focus on a series of goals...

She felt depressed for much of secondary school but has now learnt to focus on a series of goals...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Yeah, it has in, I went through a very I think, I've already mentioned quite a negative phase, I suppose I would say. I think, 'cos I used to feel depressed but would people would say, you know, 'You can't be depressed when you're, you know, 13, 14 years old'. Which I suppose is true but in another sense, you know, when you've got, when you're, you've got a year and a half off school because of this neck pain that won't go away I don't know what else you would call it if it's not depression. I used to feel quite negative and I used to you do go through the period where you question why and you still, I always get it sometimes, I get one of those days where, it's usually that little thing, that one little thing that pushes you over and it'll be something like, you're getting something out of the fridge and you'll drop it and that will just be the last thing that you can bear to put up with and then you sort of, I tend to just flop [Laughs] against the wall or sit down. 

And I went through that for quite a long time I think. Probably all the way through secondary school I felt quite oh, it's difficult to really describe it. You feel, I suppose quite bruised in a way and you feel like you're just getting knocked about by the disease one way or another. It's, there's always something, there's always a joint that hurts. You get rid of, I got rid of my hip problem and then my left knee started to hurt and it's it feels like it bounces from one part to another and when, when you don't have anything else to focus on, I'm one of those people that have to have something else to focus on, and, which I didn't in secondary school because really you're not thinking about career at that age, you're just, you're supposed to be having fun and, and growing up and I wasn't. I didn't feel that I was really doing that, I felt like I'd already grown up because I had to grow up quite quickly and deal with doctors and injections and the possibility of operations and the whole hospital thing. And grow up in the sense that I had to look after my body. I couldn't, I can't be spontaneous, I have to have tablets with me every night and you lose those things, so you grow up quite quickly. 

And I felt that in between that growing up time and actually the time that I was allowed to be an adult I didn't have much else to do, much else to think about and it, and it does get you down quite a bit. And even though you're with your friends sometimes and you, you're having a good time I've always felt like they, they can see you with your arthritis but the way they deal with it is, I should imagine this is how I deal with things, they go home and then they, they focus on something else and they forget about it. And I know that they love me, you know, they're my family and my parents and my friends but then they forget about it. But I come home and I'm, and I'm still doing it, I'm still living with it. And so for other people it's easier to deal with than it is for me obviously, because I've still got it and I'm always going to have it and  I used to feel that it was, I, I wish that I could do that. I wished that I could go home and put it away, put it to the side and just not have it and so that was quite difficult to get through. I don't really know how I got through that actually, that was  I used to go through those feelings when I'd had my hip done because I used to see, people would come and see me and, and they'd be happy and they'd be, you know, keeping me up but I could tell that they were sort of a little bit frightened for me and obviously sad for me that I was in, it wasn't really pain it was just discomfort. And, I used to think I wish I could do, do what they're doing at home and put it away and not have to deal with it.

And, but I got through that somehow. I think what I did
 

Says that she found it easier to cope with other people when she went back to university on a...

Says that she found it easier to cope with other people when she went back to university on a...

Age at interview: 28
Sex: Female
Age at diagnosis: 19
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And then things began to change as you were able to do more things?

Yeah, yeah.

Can you take me through that in more detail?

Yeah well basically that was when I was about 19 was when, that was literally when I kind of had to give uni and I, you know, I couldn't go out and do anything. And I probably had about a year where I literally only had about one or two friends that I would see or would answer the phone to and the rest of the time I just sort of, well I'd just have my mum looking after me. 

And when it got to about 20, just after I was about 20 that was when I started to be a little bit more physically able to do things. And that was when I wanted to go back to university. And that was, that was a massive ordeal because I was so frightened of what people would think of me. And I was so frightened of not being able to finish the course and if I drop out again are the university going to think I'm just taking the mickey. Are they going to think I'm just lazy. And that was why it was so nice to, to go on the part-time course with older students because they didn't judge me at all. And that was really my first kind of thing about getting back into sort of being around people. 

And like, I like, I remember, I always remember going there the first day and I was actually shaking and I just felt so sick and there was a lady who said, 'Oh you can't be in this class because you're much younger than us'. And I said, 'No I am'. And I just thought, 'Oh I can't do this, you know this is awful'. But actually it was really weird because the reason they thought I was different was because I was younger, not because I was ill. And it was just like, ok so that, that's. Ok I can cope with that because, you know, I can't change my age. And once they realised that yes I was meant to be in that class then they just didn't really take any notice. They were just like, you know, just treated me like I was just one of the, the group. 

And it does make me different but it can make me different in a positive way. It can make me stronger. It can make me more mature. And it, it's given me opportunities that I wouldn't have had to meet people and do things I wouldn't have had. I wouldn't have been able to get involved with the EPP Project if I hadn't had it. And it makes me understand people a bit more, like I'm more accepting of other people because of it.

Some young people said that another thing that has helped was 'spirituality' and 'a belief in God'. We talked to Christians and Muslims who said that believing in God gave them hope and kept them positive.

 

It is hard living with muscular dystrophy but he refuses to give up. He is writing a book about...

It is hard living with muscular dystrophy but he refuses to give up. He is writing a book about...

Age at interview: 18
Sex: Male
Age at diagnosis: 3
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Hassan' And they can fight. And I want to show the world that if you fight you can achieve anything even if you can't walk, you can achieve anything that you put your heart to. You can go through a disease. And sometimes I get angry, sometimes I get sad but then my heart says, 'Come on again, you will fight again. There's another day, there's another day.' And that's how I go through. I tell my mom this. She cries every day. She can't handle it. Sometimes she gets frustrated like me and my father but they love me and they will do anything for me. And I just want to help anyone who's like me and different problems.

Mother' According to doctors he should have died two years ago but he's still going on [laugh] and they're amazed [laugh].

Hassan' People can live with diseases as long as they can.

Mother' As long as they have the willpower.

Hassan' As long as they have the will.

What have you learnt?

Hassan' Because I want every person in the world should realise this who has any disease that don't say 'You want to die now'. Say, 'You have to, you have such a long life ahead of you even if you can't walk or talk or can't hear or can't see you can do, you can go for a long time and do so much for a lot of children.' A lot of people who think there's no hope but there is.

And I never wanted to grow up 'cause my disease grows as I grow up. I thought of myself as Peter Pan. He never grew up and be young forever. And I still have a good imagination. I read books and I do everything. I study.

It's really difficult for me to go through this. It's very hard. But I get through because of my mom and I tell her that everything's going to be ok and she cries. I do cry every day 'cause I'm still very sad that I have this. And every day I have to go through it every day and get up on and go in the bathroom, have a bath. It's really difficult. And it is tiresome. It is very tiresome to get up in the morning, take a bath, go in the room, put on clothes. Then come, go eat food and do all of the stuff. It is difficult to go to the appointments and go around and go to the doctor. It's very hard.

Mother' It totally.

Hassan' It is hard but then I have to do it because I want to show everybody that you can do a lot of stuff. You have to go through your life as long as you can because as ever you have your oxygen in your body you're alive. You have any, you've heart in your body and anything because life is very precious. You need to live it to full not to give up just that you're sick and that's it. I want to die and, and give up. I'd hate it. One part of my body says this to me. The other part says, 'No, don't give up, don't listen to it. Don't listen to your disease then stop it. Come on you have to stop it. Go to the doctors as many times as you can.' 

Mother' Its only willpower...

Hassan' And whenever I, I talk to my disease whenever it's coming back I say, 'If you come back I'll knock you down again, and again, and again as many times as you come back.'

Mother' And who have you taken your inspiration from Hassan?

Talking to parents, grandparents, friends, praying, being part of a religious community, raising funds for charities were all mentioned as helping people to live well and accept their illness. One young woman attended sessions with a psychologist to help her live with chronic pain, although most young people thought that it would have been very useful to talk to someone their own age following their diagnosis (see also 'Information and support' and 'Dealing with the family').

Several of the young people we talked to stressed that a change in attitude helped them to cope emotionally. Accepting the condition and working with it rather than denying or ignoring it helped them to have more positive thoughts about their illness and life in general. Some of the advice that they had included:

  • Follow your own expectations about what you can do, not other people's
  • Do what you think is best for you
  • Don't feel that you have to apologise for your health - it is just the way you are
  • Be yourself all the time
  • Appreciate what you can do and don't take it for granted
  • Do what your peers are doing but accept your limitations
  • Be independent but learn to accept help when needed

Young people stressed that to 'learn to think more positively' is not easy and takes time. They explained that when you live with a chronic (long-term) illness there will always be times in which you are ill or in pain. There are issues such as fertility, remission or life expectancy that you will always be concerned about, even when you have reached a happy medium. People said you have to build yourself up again, to gain strength and fitness, and to develop a 'feel good' attitude. Looking back, some realised how much their condition has affected them. They said that as time passes your condition may get easier to deal with, but in the end you have to learn to live with it and accept that it is part of who you are.

Last reviewed July 2017.

Last updated July 2017.

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