Long term health conditions (young people)

Advice to other young people with a long-term condition

We asked young people to give other young people living with a long-term condition advice about how to make things better for those living with a long-term illness. Here is what they have to say:

Managing your condition

Keep positive even when at times it's difficult.
You have to learn to fight the pain. Be strong.
Your long-term condition doesn't have to take over your life. You have to control it. It's part of your life, it is not you.
If you have asthma carry your inhaler with you at all times.
If you have arthritis and have been advised to do exercise keep doing it, even if it hurts, because you'll see the benefits and feel better for it.
Young people with cystic fibrosis need to make sure that they get their priorities right and know their own limits.
If you are feeling run down then stop and listen to your body.
Remember everybody is different and reacts differently to pain and treatment.
Just because you have sickle cell doesn't mean that you aren't normal. Sometimes it's good to be different.
Try to find a hobby to do like playing card or computer games. It helps when you are feeling rough.
Do not smoke or drink alcohol.
Make sure that you take your medication whatever your condition.
Follow your doctor's advice, but if you disagree tell them. They will listen.
If you feel angry or frustrated you have a right to be but don't keep those feeling inside you. Punching a pillow or a good cry does help.
Don't feel that you have to live up to the expectations of others whether family or doctors. Trust yourself.
To young people with muscular dystrophy: you have to have courage and never give up. Don't be scared.
Epilepsy will always be part of your life and it's not going to go away, but it's not who you are.
If you have ME/CFS do what your body is asking you and have plenty of rest.
Good communication with doctors is important. If you don't understand something, ask.
Take advantage of all the facilities and people who are there to help you live with your condition.

She advises other young people with arthritis to keep doing their exercises and to give up...

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Age at interview: 21

Sex: Female

Age at diagnosis: 12

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It's a difficult one. I wouldn't want to scare them [Laughs]. Really. I think the most important thing is that everybody's different and that everybody has it differently and because my hip got bad in one year, bad enough to have it replaced, doesn't mean that it could happen to somebody else. I would say that you have to prepare yourself mentally because anything can happen. It can be very quick or it can be very slow. And also fight very hard for what you want and what you don't. It is difficult if you've got a consultant like, like at [hospital] I had to fight very hard to get off that drug. But you have to keep at it because it's your own body and they, they will listen to you.

But also, I would also advise to do what they ask you to. You know, do your exercises and I know it's laborious and you have to fit it into your day but it's, it's really, really worthwhile because without exercise then I may have lost a lot more of my joints. And I think it's quite important, even if it hurts. Like I say, you have to try and fight through the pain and sometimes you have to know when to do that and when not to. If it's a tired pain, then you're not going to work through that but if it's a pain from maybe after an operation and it's hurting and it's feeling stiff, you just have to go through it and exercise it as much as you can within reason not, not o so you're damaging it. And just keep working through it because it will get better and you'll see the benefits of it. And then when you feel good after that, when I was walking with my hip it was just, it was the best thing to be able to go and go shopping. And I couldn't walk for very long but it was longer than I could walk for before and I didn't have this limp that made me look like I was all lopsided. And I wasn't in a wheelchair and it was it was a kind of thing that you forget about when you get well enough, you forget that you were ever in that bad place but when you fight through it and you, you do everything they ask you to because sometimes you feel like they're just being a bit of a nag and getting you to do all these things. But they are very beneficial.

And I would also advise I know it's, it's difficult if you're used to smoking or drinking but I've, I've spoken to people about it and they've cut out alcohol completely and the effects have been mind blowing. They've felt the arthritis completely ease up and likewise with smoking as well.

Sickle cell doesn't make you abnormal, 'go out there' and pursue your goals.

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Age at interview: 17

Sex: Female

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Yeah I'd just like to, you know, encourage you and say that just because you have sickle cell doesn't mean that you're not normal. Do you understand. It's like we are, we are different yeah but privileged in a way to say that we have sickle cell and have an understanding and a different side to see things from. So that's why I encourage you and keep going, you know, doing energetic things. Keep on you know.

Keep and, yeah just keep doing energetic things and you know, it's not like you'll be restricted from things. But say like, but maybe you know, just use wisdom but be encouraged just to know that you're different but it's a good thing. It's a very good thing and don't look down upon yourself. Don't condemn yourself. And you know go out there and be what you want to be [laugh].

He tells other young people with muscular dystrophy not to be scared. God gave him a brain and a...

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Age at interview: 18

Sex: Male

Age at diagnosis: 3

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Well you have to go through it you have to fight it. You have to never give up. You have to be, you have to have courage, never be scared and live your life happily. But if there are problems you have to go in your heart and say, 'You can do this'. You have to fight like I have. Any person who has any disease, any different problem just try to cope and try to fight. And you could do a lot of things if you try to help anybody or you make anybody happy because you are the one who can do the stuff. You're the one who can help other people like me, like I'm doing now to help you.

I have a lot of problems and I am still happy and I go through it. Sometimes I'm sad, sometimes I'm angry but then some days I think well it happens for everybody and you have to go through it. God has chosen me. Maybe he has chosen you too, you, all of you. Like me I have the disease but I have one thing that I give everybody, happiness. And that you can give it to a lot of people. Whatever disease you have but God has given you one thing, a heart and a brain and a good spirit. So whoever you are just think that everything will be ok. Somebody's looking after you up there.

She thinks that young people with cystic fibrosis should make the most of the facilities and...

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Age at interview: 21

Sex: Female

Age at diagnosis: 4

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I think the most important thing that like people should, like should take into account is the fact that, you know, it is really easy when you're growing up to turn your back on it, and to not really pay attention to, sort of ignore what's going on around you. But the most important thing is that you keep to your appointments, and make sure that you keep on top of your condition because it could just, it could deteriorate so quickly that, you know you need to be able to keep on top of it in case anything does go wrong. It's really easy when you're young just to say, 'Well right, I'm not taking my tablets, I'm not doing my Physio, I don't need to, I can't be bothered, everybody is telling us to do what I don't want to do, I'm just not going to do it.' It's so easy to do that because everybody, you know, nobody would blame you for doing it, but you've just to remember that like your health is the only thing that you've got so you need to at least keep that in control, and all the facilities and the people around you that are there to help you, just take advantage of them, because you know, for a lot of people those things might not be available, so if they're there for you, and if they are trying to get you do to do something, it is for a reason. It's not just for like the hell of it [Laughs].

His advice is to keep positive. Don't let it defeat you. If you let your illness get you down you...

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Age at interview: 17

Sex: Male

Age at diagnosis: 7

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Keep positive. Don't let it defeat you. That's the most important thing because if you let it get on top of you then you're going to be worse. But if you keep on top of it even when you're in pain if you just try and keep on top of it, try and keep positive. I'd say that's essential and just try and keep a normal routine. Because if not you're just going to feel completely isolated. And, if you're not in school, you're not seeing your friends, and you're not on top of it you're going to be extremely fed up all the time and that's not going to assist you with recovering and getting better. And I'd say good communication with your doctor and if, if there's something you're not sure of just ask. I'd say the most important thing is keeping positive really. That's the best method.

Her advice to young people with ME/CFS is to accept their symptoms and take plenty of rest. Be...

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Age at interview: 28

Sex: Female

Age at diagnosis: 19

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I think probably just like listen to yourself and be honest with yourself. I was really guilty of denying a lot of things and trying to pretend it wasn't happening. And I know now that, if I look back, if I'd gone to the university earlier and explained to them what was going on I wouldn't have had to give up that first course because I know they would have helped me. And I know they would have, you know, taken the pressure off. But I didn't want to admit it because I didn't want it to be true.

And I think that's like the biggest advice I would give, is just be honest and, you know. Be honest with yourself. Instead of sort of saying, 'Yeah I can still do this. I'll be fine. Think actually can I really do this?' And I think the other thing is being patient. I wanted it yesterday. You know everybody wants to be better yesterday. Everyone wants it over and done with and it is really, really hard to be patient. But I think if you can just give your body the chance, you know.

You hear of people who rush out to get every cure they can find and they take all these strange, weird, wonderful tablets and you sort of think, 'Yeah but now you can't know what's helping you and what's not helping you. And maybe it is just listen to your body and listen to what it's asking you which is just to rest. And maybe that. You just have to be really patient and just do that. But like I know hard [laugh] it is and I, so I didn't want [laugh] to do it myself. But yeah I mean I think if, you know, if I could do it again I wish somebody had said that to me. Just try and relax and just be patient. Then I probably would have found it a bit easier.

Other young people and organisations can help too

Remember that you are not alone and that there are many other young people that have the same long-term condition.
Talk to other young people with the same condition. It helps.
Get in touch with charity organisations and support groups. They can give information and support.
It is important to tell family and friends what they should do if you are not feeling well.
When you are feeling down and depressed, talk to someone; a family member or a friend. If you don't feel like talking to them write your feelings down and give the piece of paper to them.
A long-term condition can make you closer to your family and tell you who your real friends are.
Parents should try to not to be overprotective. Teenagers need space to breathe.

Keep calm if your asthma starts to worry you and tell your friends what to do if you have a bad...

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Age at interview: 18

Sex: Male

Age at diagnosis: 5

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My advice is don't worry about it. Keep calm if you are starting to have. Keep your inhaler on you at all times or near you at all times. If you're starting to have a reaction then to the asthma then take your inhaler basically or try, and try and calm yourself down. Try to calm your breathing down. And possibly if you tell some of your friends, closer friends that you have asthma they may be able to help in like a more severe situation. If, if you're having a really serious asthma attack they may be able to call 999 for you. Yeah just talk to other people about it and if you come to use the Kick Asthma holiday camps are really useful. I really recommend it. I think the maximum age is 17 but you can also help as a volunteer and learn stuff through doing that. Just, just remember that there's kids out there, loads of kids out there who have the same like who take the same medicines as you and have the same disability as you so you're not the only one really. So I'd say just keep calm if your asthma's starting to worry you don't panic and take your inhaler for example. So.

Ok. You said one thing there that is quite important is to tell others, to tell your friends '

Yeah well closer friends or friends or family. If they know that you have like take a certain treatment they'll be able to help you if you have a certain, certain reaction. I don't know. The reactions can really happen at any time even if you're not like thinking about it. So say you're playing sport on the running tract and you start, you start to like keel over and find it hard to breathe. If someone else obviously knew what was going on straight away they'd be able to pick up your inhaler from wherever it is on the side of the track and like bring it to you and help you out or call the ambulance. So yeah letting people know about your asthma is really, is probably really beneficial yeah.

If you are feeling down and depressed then talk to someone and/or write little notes about your...

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Age at interview: 18

Sex: Female

Age at diagnosis: 13

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Well, you know there is, there is hope for everyone, you might not think at the start, but there is a light at the end of the tunnel somewhere. And when you do have those times when you're really feeling down, don't keep it bottled up inside, you need to tell someone, if you can't tell them face to face then you know, do what I did and write it down. Because the worst thing you can do is bottle it up I think. I found that out, the hard way, and there is always someone there, that you can tell, and they'll help you through it. Make sure, as long as you listen to what you're told by your doctors, you know, what to do and what not to do, as long as you stick to them, you know, you're going to do really well, you're going to have ups and downs, everyone does, and everyone's different, so some things they are not going to expect might happen to you, but you know, you can get through it.

What do you say you learnt from your own experience?

I think I've learnt, you know, who my, I've found out who my real friends are, and it's also about relationships within your family. You tend to, because it's brought us all closer together, we do tell each other a lot more. And I've learnt not to just take things for granted. I mean life's too short, and you should just make the most of it, but that doesn't mean just to ignore what you're told, still do as you're told like taking any medication and things, but you know you might feel different because that was about just one thing, you know you've still got, I mean I've taken medication in the morning and in the evening and still got the rest of the day I can enjoy myself and do what I want to do. And everyone can.

She knows that parents do care but they need to be less protective and let the teenagers grow up.

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Age at interview: 18

Sex: Female

Age at diagnosis: 13

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I suppose I guess just keep a brave face and keep smiling because it releases endorphins and it does make you happy in the end [laugh] Keep laughing and find good friends to unload your burdens on [laughs]. Even though they might not like it, it is a good thing to do [laughs].

Don't be scared [giggle] I think in the end you are just unconscious really [giggle]. Still live. Don't box yourself away [giggle]. Yes [giggle] I think.

Are there things you would like to know about other young people's experiences of living with epilepsy or any other health condition?

I think I am all right [laughs]. It would be interesting to know how other people have worked with their parents and ' in driving and got round that and how their parents have reacted to' like if their parents have gone all mollycoddley with them.

What advice would you give to parents?

I know you care about your children but you still need to let them breathe and grow up and [giggle] in a way you are probably scaring them more than ' you should be. Just as long as they have got a good friend with them they will be all right, or three [laughs].

Last reviewed July 2017.

Last updated April 2010.