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Long term health conditions (young people)

Going out

Going out and having fun is important to all young people - whether or not they have a long-term health condition. But many young people said that an important aspect of looking after yourself is knowing what you can and cannot do without risking getting run down and making yourself ill. Pacing, prioritising, time management, organising - are all skills that young people have learned in order to accommodate their condition to their lives, leisure time and recreational activities as well as their work (see also 'Looking after yourself' getting the balance right').

Several young people we spoke to said that their condition didn't stop them from going out. They took certain precautions like carrying their medication with them, avoiding too many late nights or wrapping up warmly in cold weather. For them it's a question of knowing what their bodies can and can't handle.

 

She does not feel her sickle cell disease limits her from going out but she avoids going clubbing...

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Age at interview: 23
Sex: Female
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What would you have to take care of if you were going out with your friends or what were the things that you were not able to do, for instance if you were not feeling well and how you felt about it?

If I'm not feeling well then I'll make a decision if I'm, whether I'll go out and if I go out I'll come. I'll just dress really warmly and I'll take my medicine with me just in case but I won't go clubbing or anything. I'll maybe go to the cinema or something. But I'll just make sure that I keep warm mostly. I'll stay hydrated, always have my medicine with me. I don't, I don't really give myself any limitations.

Not?

Not at all but I make sure that if by chance that if I go out and I'm feeling fine and then I feel a little bit of pain then I know not to overdo myself. So just to make sure that you look after your body really so that you can still do the things that everyone else does so that you don't get ill as often.

Tell me more about sort of friends and social life. You said that you don't think that you have been limited by your condition.

If I know that I'm not feeling. If I'm feeling tired or if I've got a pain somewhere then I know that I'll maybe sit out of whatever we're doing. But if I'm feeling fine then I'll just do it. 

Ok. Do you have to cancel sometimes.

Yes sometimes if it's. Oh I think I cancel mostly if they're going clubbing because if I've got to work the next day or if I've got, going dancing the next day I know that I'm not going to get enough sleep. And then I'm going to be tired and then being tired and doing something could lead to pain so. But it's mostly going out during the night I cancel.

I think when I was growing up in [city] all of my friends knew and they would be really supportive and come and see me and stuff but now I've moved to [city] it's not something I really mention unless I am ill. But no one's ever been unkind to me or anything so I've been quite lucky in that respect. But I think if I am ill I'll just say to people, 'I'm not feeling well today, I'm not feeling too good'. I won't necessarily go into detail. And I think if you, sometimes if you do some people just don't understand how serious it is. So that's ok [ha] because you can only explain how much you can explain but. So but I've been quite lucky that people have understood.
 
 

From experience she knows that if she gets wheezy and does not have her medication with her she...

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Age at interview: 24
Sex: Female
Age at diagnosis: 7
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But socially it hasn't really affected me too much. I always have to remember to take it out when I go out in the evening and obviously if I do leave it at home I worry for the evening that something's going to happen 'cause it's not very nice being caught short. But apart from that I think it's under control [ha] and you just get used to it. And yeah it's fine it hasn't really affected my life in a particularly serious way other than. I think you just because I've had it since I was a child I'm just used to having to take my inhaler where I go, wherever I go. And used to being dependent on it I suppose.

Ok. So going out with friends hasn't been sort of a problem?

Not really I mean I've had a few instances where I've been short of breath when I've gone out and I haven't had my inhaler with me which is habit I've [laugh] tried to break. And that's been. It has been a bit scary and a few times people were threatening to call an ambulance 'cause I was just really it was out of control. 

Not really only the times when [name] and I went out and I couldn't breathe and I didn't have my inhaler with me and that was the time when someone wanted to call an ambulance and I wouldn't let them [laugh]. I think that's the only time where I've had any big problems. But I mean I have found that I've been at people's houses before though when I haven't got it with me and I've got wheezy and I've had to go home early. So it can interrupt an evening. But that's my fault 'cause I should have had it with me.
 

Other young people said that their condition did disrupt their social life. One experience that was shared by young people across all the different conditions was the need to sometimes cancel arrangements with friends or miss celebrations that they have been looking forward to. Plans could be ruined in many ways including a seizure, pain, diabetic hypos or highs, stiffness of the joints, cold weather, an asthma attack, avoiding people with colds, or going down with an infection. One young woman with epilepsy said that it can be disheartening, particularly when you have weekend plans. Another, with cystic fibrosis, found it very difficult to be in hospital when all her friends were out partying and celebrating their A-levels results. 

 

Says that a seizure can sometimes disrupt your social life and that plans and activities would...

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Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Yes, and, and that did happen. You know, sometimes we'd have things planned and then I'd have a seizure and we'd have to cancel our plans, you know, for the rest of the day or for the, for the rest of the weekend for example. There was one time where I was planning to go and see my boyfriend in the north of England. I was going, planning to spend a weekend with him. And on the Friday I had a seizure. So, you know, for the rest of the weekend I was wiped out. So I wasn't able to do that. So, yes, sometimes the seizures did disrupt my social life. It meant that I had to rearrange my plans. And because they were unpredictable, you know, it was disheartening when you make plans, you maybe plan events, you know, months in advance and then at the last minute you have to cancel your plans or you can't go to this party or this trip, you know, that your friends are going on.
 
 

Her scoliosis affects her social life because she often can't do the things her friends are doing...

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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So apart from affecting your work, your daily activity and affecting your sleep, what other areas of your life does this flare-up of pain and fatigue affect?

My social life really, because I don't really feel like going out. I mean sometimes I do feel better if I'm having a flare-up and I go out, but sometimes it can work the opposite way. If I'm out with my friends and they're dancing and I'm stuck standing really still or I'm sitting down, I just don't feel very good about myself. And it's like I'm almost jealous really, because they're up there dancing and doing things that I can't. And I feel a lot worse. So social life it does have a real impact on.

So therefore you can't be taking part in activities that young that your friends are.

No. And, simple things like shopping as well. If I'm having a really bad flare-up I can't really carry shopping bags. So say if I've bought, I don't know, a pair of, two pairs of jeans and a pair of shoes, there's no way I can carry all that when I'm having a flare-up. Even simple things like going to the supermarket and getting some bread and milk, I always like, I'll use a trolley so I don't have to carry it. And luckily enough I'm able to drive, so I move them from the trolley into the car. And also that's less lifting when I get home. And my family are very good, they'll come and get the bags out of the boot for me.

 

When his arthritis was active he never knew in advance if he could go out or would have to cancel...

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Age at interview: 17
Sex: Male
Age at diagnosis: 7
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What happened to your social life, those activities that you used to do with your friends before you became on, on remission?

I went out less I guess. And it's always a bit of a mission if you're staying round friends because you have to remember your medication. You know, you have to think, 'Well have I got this, have I got that'. But I'd say I did less with them. I was obviously less, less able to go out and play and stuff. But I can't remember it having a dramatic impact. Just remember being able to do less but can't remember it really affecting me.

You didn't experience sort of friends going away or things like that or stop? 

I don't think I've lost any friends. I'd say they've stuck with me.

I think it was just being able to do more things and not have to worry about not being able to do things. You know, just say, 'Oh yeah I'll go out tomorrow or I'll go out now'. And it was just the freedom of just [laugh] being able to be normal and not have to worry how you felt and not having to make an effort to go out. I think that's the big difference because when I was poorly I was, you know, it was such an effort to go out 'cause you don't really want to. But now I'm in remission, I don't know, just do what I want. I don't have to think about it.
 

Several young people said that they worried about what their friends thought when they had to turn down an invitation or cancel at the last minute. This type of situation could create problems between them and their friends, particularly when they were teenagers. One woman said that some of her friends thought she was 'being funny and that I didn't want to be their friend'. Another said that, when she's in discomfort, she tries to suggest alternative activities for her and her friends.

 

She's had problems with her friends because she's not always able to go out. Thinks it's good for friends to see her when she's not feeling her best so they understand.

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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And also this applies to friends and peer groups?

I've had problems with my friends, because it's difficult going out like clubbing all night. Because physically I can't, I can't do it. And if you're in a crowded bar and I need to, because I need to alternate, I need to sit down and I need to stand up. And if you can't get a seat at the bar it's quite, it's quite difficult. Sometimes I have to go home h-, early as well. So they may stay out till about 3 o'clock in the morning. I mean I'm on the bus home by 12 o'clock. I can't really do all night. And it, again it's just explaining to people that, 'It's not because I don't like you and it's not because I don't want to be friends with you'.  But also with one particular friend, I did have a lot of problems with him. Because he used, he said, 'Oh, you never come out. You're boring. You're no fun'. Because he's got a condition similar to mine, but it's nowhere near the same severity. And because he can do all these things, he thought that I can do all these things and I'm just, I just don't, I'm just not interested in him. But I think sometimes if you actually let s-, let people see you when you're not good. And I think when he saw me once and my walking was really really bad and he had to help me walk along the street, ever since then he's been a lot lot better with it. And as hard as it is to let people see you when you're ill, you sometimes, you know, you've got to, you've got to do it.
 

Many young people living with conditions such as asthma, epilepsy or type 1diabetes, said that when they were teenagers or just diagnosed, they worried a lot about the effects of their condition on their social life. They felt limited and thought that they would have to change their social life to accommodate their medical condition. One teenager, diagnosed with epilepsy, said that she thought she could no longer go clubbing because the strobe lights might cause a seizure. A young woman diagnosed in her early twenties with type I diabetes said that she was afraid of going out in case she had a hypoglycaemic or hyperglycaemic episode.

 
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Her doctor said that strobe lights could cause a seizure. When she goes to clubs she tells them...

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Age at interview: 19
Sex: Female
Age at diagnosis: 16
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And like I don't, it's quite difficult because none of them have, like my female friends, those three, have never, they've never been like, like, to, to me anyway, like I don't know if perhaps in their, you know, with, within each other they've been a bit like, 'Shit, you know, should we take, should we go out with her clubbing again?' you know. And one of the things that the doctor said was that strobe lights could affect me having a fit. But they never have. I mean I've been into lots of clubs and there have been strobe lights. Usually I tell, go up to the DJ, because they have the control of the strobe lights, and I'm like, 'Excuse me, I've got epilepsy. Can you not put it on for too long, because it makes my eyes go weird?' And they're like, 'Okay, right'. And they don't usually do it after that. Because the club owners don't want things like that happening in their, in their places, because it's not good, not good PR for them really, is it? But, yes, I think those four were quite, quite supportive. And they didn't sort of stop me from coming out with them and stuff. And they were just a bit more wary I think. 
 

Some of the young people we talked to said that their social life wasn't affected much because all their energy goes into working towards achieving their own personal goals and going out is not always a priority. A student with cystic fibrosis, who is in her final year at university and working part-time, said that at the moment she doesn't have the time to go out.

Not everyone is able to go out with their friends or family. One sixteen year old is having to spent weekends at hospital having dialysis and only sees his friends when he goes to school twice a week. He says that he makes up for it by playing computer games and watching videos. His mother said that his social life would be greatly improved if he were to have the dialysis treatment at home. An eighteen year old living with muscular dystrophy would like to see better disabled access in transport and public buildings for people in wheelchairs. A young woman with chronic pain finds social life very difficult and said she has missed a lot of both family and social events.

 

He could not find the disabled access at a London museum he wanted to visit. But he is busy...

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Age at interview: 18
Sex: Male
Age at diagnosis: 3
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Hassan' And I don't have any access. Once we went to the Natural History Museum in London and there was no entrance. I couldn't find an entrance for me and so we couldn't go there. So we went to Madame Tussards. They had a way so, so I went there. Couldn't go to the Natural History Museum, no access. I still want to see the Museum of Natural History if there is a way to go in.

You should write to them then [laugh]. Ask them what about access for people in wheelchairs.

Mother' We wrote a letter to MacDonalds.

Hassan' To tell them that Muslims need halal food and we are Muslims so they should be halal food. There should be halal MacDonalds for the Muslim community. There is a huge Muslim community in England that is so. And they wrote back and said we don't have enough space in the kitchen [laugh].

My teacher wrote to the author, you know, who wrote Harry Potter. He told her, 'Please Hassan, it'll make Hassan's day to give, wish him Happy Birthday and by you signed a letter to Hassan. So she said, 'Maybe it will happen maybe she will, maybe she won't even send a card'. But she did.

Yeah. 

Hassan' And when I opened. First I read for the attention of Hassan [surname]. And when I said, 'Why is it for me?' Then opened it then When I read it I, I'd an autograph and I thought it was a dream.

Mother' From her.

Hassan' Well I thought it was it was dream like and it wasn't a dream. I said, 'Somebody pinch me and'. But then when I read it again I said, '[Teachers name] told her'. Then I wrote a letter to Rowling back.

Mother' To thank her.

Hassan' Thank for her, for'

Mother' To thank her.

Hassan' To thank her and giving me such confidence to write my own book 'cause she's a very good writer. And I'm still waiting for an answer [laugh].

Mother' A great.

Hassan' But she gave a good inspiration for me to write and read.
 

Learning to drive can be very important for young people who can't easily get around using public transport. One young man who's had arthritis since he was two years old recently passed his driving test. Driving has given him a new freedom and independence and he is able to go out more often than ever before. 

 

Talks about what he needed to do to get a specially fitted car and what it means to him to have...

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Age at interview: 23
Sex: Male
Age at diagnosis: 2
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I applied on my 16th birthday because when you are disabled you can drive earlier. But you have to fill in these forms. Because it is Motability is the company, and this scheme, you know, and can basically you apply to them and they give you funding or they supply funding. You know there is all various different aspects to it. You know whichever one suits you they put you in you know there is all different like categories. So obviously depending if you are in a wheelchair or what have you, you need different things. Obviously everyone is different. So basically just apply. You know the forms you have to fill in. You can phone up for a form. You know go on the website or phone up for a form. And then the forms you know are about that thick. And I am not joking. You know extremely thick. But you send them off. Then you just have to wait. You know you can wait a long time and then it either gets approved or rejected. To apply though you have to be in receipt of the higher rate' you now the Disability Living Allowance, you have to get the higher rate for that otherwise you can't get the car on the scheme. But you know there is lots of people that are. But I got mine upgraded to that. So anyone that wants to apply they have to get the higher rate of the Disability Living Allowance. And you just have to wait a long time and eventually you get a reply saying you have been approved. So then you have to' you then have to go along and you talk about what you do and you have to go for an assessment. And you can go to your local hospital and whatever. Basically you go through quite a strenuous assessment of your strength and what you can and can't do when you are there and it takes ages and that gets done and that gets sent off and you then get a better idea then of what you are going to need to be able to drive and if it is possible for you to drive. I mean some people may not be able to drive because they can't use their arms or something so, you know, but even in that situation you will be amazed at what things they can do. I mean some people drive with their head you know, some people just knocks their head. It is amazing. 

Typically because you are severely disabled it doesn't mean you can't drive. But I would say at least apply. You know. Anyway you just wait and wait and wait and have to go through these assessments and you go to meetings, you know you have to go to' there is local places you can go to anyway eventually they come up with a few cars which are possible for you. Anyway you get assessed for the adaptations you need and quote and in the quote you think blimey, I mean that car is '40,000 the car is '12,000 and the '28,000 is adaptions. I mean you haven't got to pay that yourself, you know money, I didn't have to pay that but you get, it all gets assessed and obviously they meet the cost, you know, you do have to have some kind of agreement. Like you might not be able to have that because it costs too much. So you might have to settle for something less. Basically it varies from person to person. Anyway basically the costs get approved, but as time goes on the costs just get more and more because as you go, you have to go down to the' you get assigned to one of the twelve centres, because these adaptation companies where the car goes to, and there is only twelve of these in the whole country. I had to go to one in Wales, every you know to go into the car and to sit in the car and see what, you know, would need adapting and changing etc. So I mean that was over a period of about three years. And up to then the car was just sitting in this garage for three years while they worked on it and while the funding was approved and you know such a long process but in the end it is well worth it.

You got it?

Yes. I got it.

And
For information on driving and transport see our practical matters resources.

Last reviewed July 2017.
Last updated February 2012.

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