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Long term health conditions (young people)

Taking and not taking medication

People who started treatment when they were children initially had their drug routines overseen by their parents, but as they got older they took over this responsibility themselves. Parents found various ways - some subtle and some not so subtle - to encourage regular use of their medication. 

Medication may also need to be taken when people are in remission or feeling well- one young man commented that he saw his drugs as a 'safety net'.

There are several (related) reasons why young people may not take their medication. These range from 'just forgetting' to consciously deciding to stop. Young people in their early twenties sometimes told us that when they were teenagers they had gone through a stage of feeling negative about their condition and thinking it was unfair that they had to take care of it. Having to take tablets and deal with side effects, such as putting on weight, as well as, on occasions, worsening physical symptoms, made them feel different from other young people. They sometimes felt miserable or depressed (see 'Feelings and emotions') and asked themselves 'Why do I have to take tablets?' or 'Why do I have to do these exercises?' One young woman commented that it is hard for doctors to know whether the young person is deliberately not taking their medications, or whether they are just forgetting because they are disorganised (which doctors sometimes seem to assume to be the natural state of teenagers). She was aware that her parents knew when she stopped taking her drugs because they could see that her bottles remained full.

 

Finding out about her life expectancy made her not to want to do her treatment but the support...

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Age at interview: 21
Sex: Female
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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].

I think in a way everyone rebels at that age, it's teenage, you have to do it. I think you find yourself at the same time, so you'll find when you do get out of that stage, you have to go through it, because then you've done it, I'll say, 'I've been there, I've done that'. And then you come out and you're like, 'right this is actually what I want to do' and you do, you do need someone there that's pushing you in the right direction, being an absolute nag, pain in the arse, you don't want to do it, but someone that's constantly pushing you in the right direction.

That's usually the Mum? 

Hard love. It wasn't actually my Mum, it was more my Dad, and probably my healthcare professionals like my nurses, my doctors, kind of.

So in a way they '

I think they put up with it a lot. They put up with us being that way, but then got serious 'right you need to stop doing this'.

I mean around that age there is non-compliance with treatment.

Yeah, great problem.

In some cases young people said they had thought that if they took painkillers it meant that they were weak and could not cope with pain. Others said that they couldn't see the actual benefits of their treatments and thought that they could manage without the medications - although after experimenting with not taking the drugs they often found that they were far better off with them. A woman with sickle cell disease said that she didn't like having to wake up every day and take medication. A young woman who discovered that she had a limited life expectancy said she 'rebelled' and stopped her treatment for a while. 

 

In her teens she became aware that cystic fibrosis is a serious condition. Her response was 'to...

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Age at interview: 23
Sex: Female
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I maybe, towards my teenage years once I realised that it was a life-threatening condition that was something that I hadn't previously been aware of. It's not maybe something you necessarily want to sit a five-year-old down and discuss. And there was not actually any official discussion. It was just a matter of at one day I don't know how I just found out that I might not live very long. And that was obviously really upsetting. And I think that's when I started to go off the rails a little bit. Not to the extent that most people do. But I started rebelling. I didn't want to take my medication. I found that if I didn't take my medication for a few days it didn't seem to have much effect on my health, my immediate health. 

What I didn't realised is that long-term it, it had a massive effect because it would lead, if I didn't take my vitamins it would lead to deficiency. If I didn't take my enzymes it would lead to bowel problems. And so obviously I was doing myself more harm than good. I mean I gradually got over that. I just started to mature and started to see that really I was being silly. I was being immature. There was nothing to be gained by not taking my treatments. 

By this time I was doing physiotherapy twice daily but it was on the night time when I was watching Coronation Street it wasn't a huge burden. I mean I had to do it and I was sick of doing it. It was very monotonous and, you know, doing it over and over again every day but I had. My mum and dad reminded me to take my tablets, getting on at me to do my physio. And, you know, I started to do those things again gradually on my own. I think I, my, my parents just left me to it. Basically, they said, 'Here's your treatment, do it or don't do it'. But they would gently, gently push me towards doing it and gently remind me. And eventually I just got to the point where I wanted to do it for myself. Particularly as I went to university which followed on straight from 6th form. 

And I met my boyfriend whose now my husband. And he was very encouraging and I think when you meet somebody special. Maybe not even when you meet somebody special but you reach a point in your life where you think, 'I want to be around to be with this person' or 'I want to be around because I don't want to', you know, 'Have my family have the', you know, 'Go through losing me at such a young age just because I couldn't be bothered to do my treatment.' And there's that sudden realisation that you've just been rather selfish and rather [ha] silly. But I think that every person, you know, might go through that and I think you have to go through that and come out the other side to be able to appreciate how lucky you are to have all the treatment and medication and technology that's available now.

As they got older, young people said they gradually shifted both their behaviour and the way they thought about their illness. This process was greatly assisted by the support and sometimes the 'nagging' they got from parents and doctors. A young woman said that growing up and becoming 'less selfish' was an important reason why she decided to take control of her treatments. 

 

She went through a phase of not wanting to take painkillers for her scoliosis but found the pain...

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Age at interview: 22
Sex: Female
Age at diagnosis: 16
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I went through like a stage of just really being annoyed. I just thought, 'Oh, why have I got this? This is so unfair. What have I done to have this? Why do I have to take my tablets? Why do I have to take my painkillers?' And I went through a stage where I wouldn't take no tablets at all. I wouldn't take no painkillers, I wouldn't take any pain relief. I wouldn't do my exercises. I just thought, 'No, if I don't do it, it will just go away'. And when I actually did start taking my tablets regularly again I did realise what a difference that it actually made. And I just thought, 'Why was I such an idiot? Why did I stop taking them all?' But I thought, 'Well, if I'm not taking the tablets, then it won't exist and it will go away'.

How old were you when you stopped?

I think I was about 18 I think. You know, I didn't take my tablets for months. I just wouldn't take them. And it was only when I went, I finally, I went to the doctor's and said, 'Oh, I'm in so much pain. I can't cope no more'. And I really did get depressed. I was really really low. And they said, 'Well, take your painkillers'. I said, 'I'm not taking painkillers for the rest of my life'. And she went, 'Why?' And, 'Well, because I don't want to take them'. And she went, 'Why don't you want to take them?' She went, 'For God's sake, it's one tablet. Take it'. And she just, it was just like her bashing my head against something. She just, I don't know, she just really sort of knocked it home that, 'You have to take your tablets. And just because, just because you take tablets it doesn't mean you're a bad person. It doesn't mean that you're not coping'. Because that's what I felt as well, 'If I'm having to take painkillers I'm not coping'. I just had to have a bit of a stern talking-to in the end.

 

She was forgetting do to her lunchtime injection at school because she was too busy and at home...

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Age at interview: 17
Sex: Female
Age at diagnosis: 6
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If you don't take your insulin you're gonna go high and, a lot of my problem when I was younger is I was very much forgetting to do my insulin.

Why?

Oh I think it was more to do with a lessons, up until I was about fourteen I done my insulin on time, I set my times so I did it every, sort of,  well so I done it every time I ate pretty much with my insulin, with my meals I had insulin, and that was, that was okay and then when I got to about fourteen I think I just, I got out of the routine and I, at school was a big problem for me 'cause it was changing my lunch hour and from what I'd been used to before I was having lunch later and I was taking on school activities and not like eating to about one, two o'clock and it was like right from my lessons so, I was eating and then forgetting to take my insulin and after that, to, for about a year and a half, two years I was in, I was out of a regimen completely and my diabetes got very uncontrolled and now I think I've got back into the regime and I'm doing a lot better for myself, my diabetes is in control so.

How many times were you injecting at that time?

At that time I was injecting every time I ate, say three times with my meals plus one before bed which was a different insulin.

And you were sort of forgetting to do the one at lunchtimes?

I was forgetting to do the one at lunchtime and then after a few months it was the one at breakfast time [laughs], and it was just, I'd gotten into a way of having my insulin put, perfect for all these years and then suddenly I changed and, it was, occasionally a few at my dinner time, occasionally my lunchtime, occasionally my bedtime and that caused a lot of problems for me.

And at school why were you forgetting to take, to take it?

I think it was more that I was in a rush, I was doing lunchtime activities, right I did gymnastics at school and they, they were finishing sort of as lunch hour finished, and it was a case of get dressed and have my lunch and get to lesson within five minutes and that was, it was a rush and I think that's pretty much what started everything. And then from there you just, I pretty much just kept forgetting when I was going out with friends or if I was staying over a friend's house, and then when I was coming home, like from a friend's house I'd, it's kind of you get out of the regime and it just, you can't get into the regime and so at home you have the same problems and you still forget and, in a way you kind of get lazy [laughs] as, you just forgetting to have your insulin.
 
 

He went through a 'bad phase' of forgetting his insulin injections and says it was because he...

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Age at interview: 16
Sex: Male
Age at diagnosis: 11
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Yeah I was injecting myself. I think my parents only ever done one injection on me. And that was to check that they could, just in case I was ill or something.

Who taught you how to inject?

The hospital, [name] hospital, very good in teaching me all the things, like the day I was diagnosed I did my first injection in the evening; they really helped me with that.

Okay. Do you inject every time you eat or you forget sometimes?

I inject every time I eat, I forget very occasionally, but that's becoming less and less now.

So it was more frequent before.

Yeah, I've had a few times where I've forgot quite a bit, but now if I forget then I just feel ill later. So it's better just to remember.

Okay, so how old were you when you were forgetting?

Um.

Forgetting the injections?

I don't know really, I think it's happened a few months back as I went through quite a bad phase and I was forgetting quite a few. But not as much now.

Why do you think you were forgetting?

I don't know it just slips my mind. And now I've got into a routine, as a habit at the table, just before I eat so that I can't forget it.

What did you find difficult with the other routine?

I had to have snacks every couple of hours which wasn't very healthy, and gets quite annoying as I had to keep remembering, but now I have a lot more freedom, I can eat within reason as much as I want and still do an injection for it. Whereas before I could only eat certain amounts at set times. It's a lot better now.

Young people also sometimes 'prioritise' when it comes to their medical treatment(s). Some chose not do certain things like physiotherapy because they felt that they didn't need it. Others indicated that if they are in a hurry they will do the treatment that makes them feel better and perhaps leave the others for later. 

 

On a busy day she would do her physio before leaving home and use her inhalers on the bus. Says...

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Age at interview: 19
Sex: Female
Age at diagnosis: 8
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Sometimes you feel tempted to do more than you should?

Yeah I've, sometimes I feel tempted to enjoy myself more than I should and maybe put. Well it's kind of hard but like for example in the summer when I was travelling for the first time in about ten years I didn't do my physio, just for one day. I woke up late and it was a really hot day and the air conditioning wasn't working so I was fed up and I was like, 'Oh I don't want to spend the next hour in this hot room doing my physio. I'm just going to, I'm just going to go to the beach. And I'll do my physio later.' And that's what I said. But when we were on the beach one of my friends, she wasn't being mean or anything. She said like, 'Do you want me to help you with your physio?' And I was like, 'Oh I'm not in the mood, like I'll, I'll do it later.' And the day got later and then it ended up that we were going out for a meal at about 7 o'clock or something and I hadn't actually had time to do my physio. And so I said, 'Well I feel fine, like my chest doesn't feel that bad like. I will just leave it for today. I won't bother doing any.' And I didn't. 

And the next day when I woke up in the morning just like my chest was so tight and my breathing was so much more difficult and it was so like. It was just really. It just, everything felt so much effort just to like do little things. I thought, 'Gosh it just shows what missing one, for me personally what missing one session of physio can have an effect on'. And it took me a good two or three days to get my chest back to normal. So at uni, like my main priority in the morning, I would never wake up and go and do something different. I always wake up and do my, my physio because I could never, ever. I know what happens if I miss it.

So I always put my physio first and almost always put my nebulizer first. There will be the odd time when I'm rushing to go out somewhere or do something. I haven't had a chance to do my nebulizer and I will literally just think, 'Well I'll just miss one dose of that for now'. So it's kind of almost prioritising. You know what's good for you but it's, it's almost prioritising, getting your right priorities right. I mean is it essential to do a nebulizer when everyone's waiting for you and you're in a rush and it's just one dose. Well I think sometimes it's not 100% essential. Other times, I mean because I've got this nebulizer because it is so small and so portable I sometimes do it on the bus on the way to university. And people might look at me and think, 'What's she doing?' But I don't care. I mean it's saving me ten, fifteen minutes which in a morning when I'm in a rush is, is a, is brilliant.

Long term side effects

Young people were sometimes worried about the possibility of long-term side effects from their drugs. For example some drugs for epilepsy can have an impact on fertility and pregnancy (See 'Contraception and pregnancy'). Young people weren't always reassured by their doctors and worried that the doctors didn't know about all the long-term side effects. A young man with asthma had been told not to worry about taking medication but he said 'If you're on that much medication you have to worry'. He was concerned that he might become in some way 'dependent' on them and that if he had to take more tablets it meant that he was getting worse - but had not yet asked his doctors about his worries.

 

She was made aware of the importance of using contraception when having sex because the drug she...

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Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Again when you were a teenager, did they  talk to you about contraception?

Yes, they did, because that's quite a relevant issue for, for people who are taking medication. And one of, one of the things about my medication is it makes the pill less effective. So if I was on the pill, I would need to take a stronger pill because of my other medication. So, yes, they did bring that up. It was quite embarrassing because my mother was sitting next to me. And there was this 50-year-old guy talking about sex. And you just want to die, and just forget about it. But, yes, they did bring that up, yes.

Did they explain it to you in an easy-to-understand language?

They explained, you know, that, that it was an issue. So, yes, they explained it very quickly. And later on, you know, I found out information or I found leaflets perhaps from the voluntary organisations. There's a lot of information on the Internet. So they explained it very briefly. It was a, more of a kind of question and answer, 'Are you having sex? Are you on the pill? This is what you need to know'.

How do you answer with your parents there?

Absolutely. You know, it's incredibly embarrassing. But absolutely. I mean I was, when I was diagnosed I was 15, so I did have my mum sitting next to me. I guess when I was about 17 maybe, I started having appointments by myself. And then when I was 18, 19, I went over to an adult consultant. So again, you know, the appointments were by myself. And it was a lot easier to bring up those kind of subjects.
 
 

She is worried about the side effects of long term use of steroid cream. She uses it only when...

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Age at interview: 22
Sex: Female
Age at diagnosis: 11
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Yeah, one of the things that they prescribed for me is steroid cream and  I'm wary of that because I know that in the long term it thins your skin and most of the places I've got eczema are like places where your skin is very delicate anyway, like inside of your elbows or eyelids. And you think, every time I'm doing this my skin's, you know, going to deteriorate, you know, use it. And I think, well what's, what's it going to look like in 20 years when I've been using this steroid for that long, since, you know, I was in my early teens.You know, so that's kind of a long term side effect. 

In the short term, steroids are really good because they just make everything feel like it's gone away for a little while, because they you know, take the inflammation away. So, yeah, they, that worries me a little bit.

So that's the main one?

The only other one is things that have been prescribed to me that aren't suitable to me, things that are really oily. Or water-based things. They're just, my skin just, it just sits on my skin and aggravates my skin more because it obviously, it attracts dust and things and just really irritating. So, that's like a short-term side effect. Which is just led me to not using them basically.

And what has the doctor say, regarding the steroid cream, the long-term effect? Has he said anything about it?

No, it's not something I've asked about for a long time. I've said I'm concerned about using this on my eyelids and they've said, well use this really strong thing for a little while and then stop using it. So they don't recommend that obviously long term but eczema recurs and recurs so you end up using it long term. 

Have you found any kind of natural product that helps?

I've heard of things but I haven't actually used them. Like different, like linseed oil you're supposed to take, like having a daily intake of linseed oil and, is it starflower oil? And evening primrose. Probably some fish oils but I'm vegetarian only, so, but I haven't, I think the cost of those, having to buy those from I don't know, a health food or, you know, kind of related shop, puts me off because they're just, they're a lot of money. 

Yeah.

I'm a student [laughs].
 
 

At the age of thirteen her consultant told her that she couldn't get pregnant while on medication.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Were you six, seven?

Sarah' No I haven't had them since then. Since I've been on the methatrexate, since I've been on, thirteen yeah.

And you can't get pregnant on these tablets at all because it can. The baby that's growing inside will be deformed in some way 'cause they are really strong. And, but now they said that I can have on occasions a little bit of alcohol but not to the extent that you are really drunk [laugh].

One of the consultants said that she normally puts people on the pill who are on these tablets for the contraception but, I'm not [laugh].

Were you with your mum when she told you that or?

Sarah' Yeah and then the lady took me into the other room then and asked me discussed with me and asked me what I wanted to do.

Mother' Boyfriend and things like that.

Sarah' Yeah. Like if I had a boyfriend and if I was sexually active or anything.

So they tried to find out?

Sarah' Yeah.

In order to prevent any kind of'

Sarah' Yeah.

'pregnancy that.

Sarah' 'Cause they said it wouldn't be a nice experience for me to go through because of then being to keep the baby 'cause they would be really deformed.

Ok so they made you aware of that'

Sarah' Yeah.

'from the very beginning?

Sarah' From the beginning.

Last reviewed July 2017.

Last updated February 2012.

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