Friends are really important to young people regardless of health. Young people don't want their friends or peers to treat them differently just because they have a medical condition. They want their friends to acknowledge their condition, understand and be supportive but most importantly the ability to look past their condition to the individual themselves. Here young people talk about how they felt about telling other people about their condition and how their friends reacted and behaved towards them.
In general the young people interviewed said that their friends were very supportive and even protective. One young woman with arthritis said that if she and her friends are in the pub and things get 'a bit rowdy' her friends move her aside to make sure she was OK. We were also told about friends who were happy to come round to watch a video instead of going out, and some who made hospital visits, reminded people about their medication and even told them off if they were doing things they shouldn't.
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- Donna lives at home with her mother, stepdad and younger brother. She is recuperating at home from a kidney transplant. Ethnic background/nationality' White British.
Well there was when I first started on dialysis there were, there was three other children already on dialysis. One was only a young lad, he was, I think he was three when I started, and then there was a young lady, she was twelve, and an older lad who was, he was a year younger than me, so when I was first on dialysis I was, I'd just turned sixteen, yeah, and he was just under sixteen at that point, so I managed to get on quite well with him. But because they'd already been on it a little while, anything I needed to ask from someone else's point of view who was already on it, they were quite happy to answer, and it also, I think it was quite nice for my Mum to be able to speak to their parents, to understand how they found it as well, having a child that was on dialysis. But, then we had some really fun times in there, even though we were attached to our machines, we'd still, we'd have a laugh, we'd joke around with the nurses and things because you know when you're stuck there for four hours you tend to just have a good joke with everyone, sometimes if we were lucky enough and there was only two of us in there, our nurses would move our machines closer so that we could play things like board games or cards, things like that. So, yeah it was good fun, there was a good group of friends there.
And your other friends, the friends that you had from school, the new group, I mean, you managed to keep in touch with them regularly?
Yeah. Sometimes I think I had about two of them that would every now and then, if they had like a TD day, they'd come up to dialysis with me and sit there for a while with us, which I found helpful because tend to get a bit bored as well. And sometimes when I was on the ward, all of them, there were about six of them, would catch the bus up to the hospital and come and visit me for a day, which used to really cheer me up. So they have been really good, its just that there's certain things that they didn't understand like, what I was allowed to eat, and I wasn't allowed to drink much, and just things like that, but yeah, I mean they are still really good friends now, so I'm lucky to have them.
Some of those diagnosed as teenagers said that they have lost friends following the onset of their medical condition. Sometimes friends didn't understand the symptoms of their condition which could lead to misunderstandings and fallings out. A girl with ME/CFS said that she was so exhausted that she couldn't even lift a phone to her ear to talk to friends. However as she looked OK friends were not always very sympathetic. One girl diagnosed with epilepsy said that it was hard to make friends because her bad memory meant that she couldn't remember conversations she'd had with other people and tended to repeat herself. Sometimes friends didn't know what to do to help and 'freaked out'.
Some young people had to have long stays in hospital or lengthy periods of time when they were ill at home. This could mean that they lost contact with school or university friends. When they returned to school or college after a long stay away they might find themselves in other classes with a whole new group of people.
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- Charlotte is a full-time student doing an Art Foundation course & is planning to go to university after its completion. She lives at home with her mother & younger brother but will move out when she goes to university. Ethnic background' White British.
I mean when I was first diagnosed mum thought I was just day dreaming really and I was just blanking out and coming back again. I wasn't really - they weren't proper absence seizures. Well mum didn't think they were. They weren't ' she just thought I wasn't paying attention [laughs]. And kind of ignored me as well for it. But at school I was actually talking in my absence seizures and singing. Which actually my classmates thought was quite funny. But actually at school they all thought I was looking for attention with my'with my epilepsy, so '
Before you were diagnosed?
And, when I was diagnosed with the tonic clonic. I have only ever had one tonic clonic at school so '
Who said that you were looking for attention, your classmates or '
Well they, they kind of gradually moved away from me. Strayed away and I suppose not understood in a way, kind of what I am going through [laughs].
Even after you were diagnosed?
And were your sort of'?
They were my friends.
Your group of friends at school?
Yes. I mean, and one of them, was my best friend and I thought she understood me but ' I mean she even saw me having a fit once, but ' and she is at college with me now. So I think she still thinks I am looking for attention, but '
She is not your friend any more?
Okay. So there was a lack of understanding of your condition?
And in fact at [name] Hospital there isn't an epilepsy nurse, there isn't enough people to help get across the information that needs to get across that it is isn't '[laughs].
So no nurse went to your school and explained to the teachers '
So who went to your school, your mum?
But the school knew?
Yes, but actually, I suppose my mum, I can't remember. My mum must have gone. Yes.
Okay. How did it make you feel at that time when you were 13 and these friends going away and leaving you?
Kind of what have I have done wrong, kind of a time when you need people and '
They are not there for you?
Did you make new friends?
Yes [laughs]. I have got very good friends, I have got three very good friends.
Okay and you told them about your epilepsy?
Yes. They all understand me.
Some young people have faced difficult experiences when their peers or acquaintances made rude comments about their appearance or thought it was funny to make jokes about their condition. These experiences can be very distressing at any age but particularly for young people. One woman said that as a child she used to cry after hearing comments from children in her school. A young woman remembered that when she was a teenager she reacted angrily to someone who thought it was funny to make a joke about her epilepsy.
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- Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.
And in fact actually that was one thing that, when I was travelling we met this guy, who, he ended up coming to India with us for a, for a few weeks. And I think it was the day, the day I'd had the fit, [name] had bumped into him in, in town. And he was like, 'Oh, where's Lara?' And she's like, 'Oh, she had a seizure. She's in bed, feeling a bit mashed up'. And he was like, 'Oh, what's wrong with her? Like, what do you mean, a seizure? Has she, she got something wrong with her?' And she was like, 'Oh, yes, she's got epilepsy'. He was like, 'Really? Oh, God, what a pain'. And like really quite weird, like he found it quite strange and like didn't really know how, after he found out about that I definitely felt that he looked at me in a different way. And I remember one evening he was quite drunk and he made a joke about, I can't remember, it's quite, what is it? I can't remember how, how the joke is told, but it's basically about putting someone who's having a fit in a bath and using them as a washing machine, like because you're having a fit. And like just a really stupid stupid joke and a stupid comment for someone who knows nothing about it to say, and particularly to say it to someone who's got epilepsy. And I remember feeling so, I was so angry. And like I went completely ape at him and was like, 'Who the fuck are you? Like how dare you make joke out of my disability. Like, you know, you don't understand'. Like, and it, that was really horrible and I felt really judged then and that really upset me and I just couldn't understand it. Like I was like, 'I can't believe you'd make a joke out of something like that. It's not funny. Like I can make a joke out of it, because it's me and it's my way of coping with it. But you certainly can't, because who are you? You don't know anything about it'. And that was, and he felt so awful after that. I remember after that, I remember that, because we were a bit drunk when we had that and I think I was probably quite mean to him, and I remember afterwards he was really apologetic and felt really guilty, but still definitely looked at me in a different way and was a bit more nervous around me I think.
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- Sarah is a full-time student. Lives with her mother and father. Ethnic background/nationality' Welsh.
Tell me more about how you felt at that time. And did you lose some friends and that kind of thing.
It didn't start when I was seven. It started when I went, when I changed schools from primary to comprehensive, to secondary school. 'Cause it was new people that I didn't know and they was. They didn't know me and they was looking at me. And I just. I did feel like, a bit like pushed out. I, because they was looking at me so much then I would think that they were, like if somebody looked at me I'd automatically think that they were looking at my nose because it's the first thing that you see. And.
And when I was in school there were a few people that did say nasty comments but my friends would just cheer me up then and just change the subject and just move like, you know, just move on.
How did you feel about that?
I'd feel upset and I would sometimes cry but now it doesn't bother me at all.
But at that time.
But at that time it was new to me and it. It was new to me and I was just getting used to it myself and then I'd had people then saying stuff and it wasn't nice.
Young people don't necessarily want to discuss their medical condition with friends and classmates - often because they don't want to make a big deal of it or be seen as boring. A young man with a heart condition didn't want to talk about his illness because he found it too upsetting. Many young people said that they only tend to discuss their condition with close friends who know everything about them anyway. If they began to feel unwell when in general company they might give a brief explanation but avoid going into great detail. Some conditions are more widely known about than others. For example young people with asthma thought that most other people have a general idea about what to do if they were to need any help.
Some young people said they usually avoided talking about their medical condition when they met someone new. They really appreciated friends who don't introduce them in terms of their condition e.g. 'this is Mary and she has arthritis'. A young woman with CF said that she actually dropped friends if she felt they were being patronising by always asking how she was. One young man said that talking about your illness limits the conversation and he would like to think that there are other more interesting things about him.
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- William lives with his mother and sister and plans to go to university next year. William feels that hospitals should build wards for young people. Ethnic background/nationality' African.
Between the support group ' and my friends outside?
There's not really a difference between ' sorry between the group and my friends outside.
But you know we're all ' like my friends outside they don't really treat me like I'm you know not treatment me like I'm different. But they most of them they know that I have you know sickle cell. But they don't really look at it as a disease or a disorder. I just go about you know my life and it's the same as within the sickle cell, we don't really try to think about it that much. We just get on with our lives and stuff I guess. But you know they're all there to help so '
Some I've told them like what in this case you know in this situation this is what to do. But the others they'll just probably react and they'll just call 999 or something. But you know nothing serious would happen. I'd probably just' I'd fall into a crisis and then I'd just go home or something if anything you know. But I've never really you know been in that situation when I've been outside and something's happened to me. I've never had a crisis outside I think it's always indoor.
Why have you decided not to tell?
It's not more of, that I haven't decided to tell, it's just people, you know, don't know, like nowadays everyone's in, you know, a hurry, people don't really have time to, not time but everyone's kind of doing their own thing and like my close friends don't, even those who are not my close friends, some of them know but college is, I'm, every time I'm in college I'm only there for one thing, and soon as college is over I'm out. So I don't really mix with a lot of the people. But apart from that, like, you know, my, some people at the college do know. And the teachers know so if anything, but it's not something that's always brought up, like, you know. They'll keep it private and no-one really talks to me about it.
For those who were diagnosed in childhood and brought up in small communities 'telling' has never been a big issue because everyone they knew has always known about their condition. One young man diagnosed with arthritis at the age of ten said that he felt different from his friends and peers but no one treated him differently and all his friends rallied around him.
Several young people thought it was important to explain to friends and peers everything there was to know about their condition and liked helping educate them. They see it as an advantage because it provides them with extra support if and when they need it. They also made the point that people need to know otherwise they wouldn't know what to do with you if you feel ill. For example young people with type 1 diabetes said their glucose level might go up or down without much warning and they might need their friends to know what to do. A young woman with chronic pain, however, said that she prefers not to tell many people about her problems and how she manages them. She said that most people ask out of politeness but very few are genuinely interested to know how she really feels.
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- Mica lives with her mother, a brother and a sister. Mica is at college studying for her A2 levels. She does Drama and Dance and in the future plans to go to university to study childcare. Ethnic background/nationality' Black British
Yeah. Well I always have to you know, tell them what sickle cell was and was about that. I never told them until I had the attack. Maybe if they brought it up and don't know how it will come up in a conversation but maybe if it came up in a conversation then I would tell them about it. But they never really knew and understood until I had the attack. So maybe you know, I'll have an attack and they'll be, 'Oh what, what happened, what went on? I thought you was dying and'. Then I'll say 'No I have a, I have a disease called sickle cell'. 'What's sickle cell? What's sickle cell?' And I'd tell them that there's something wrong with my blood cells and they'd be. 'Ok then' I always had to just, always had to describe what sickle cell was, always.
So they are curious. Are young people in general curious about it or has anybody or anyone been unkind to you or?
No. No. When I talk about sickle cell I've never been, you know, treated in a horrible way because of sickle cell. No way. People are always kind. And yeah they feel it, they feel for me. You know they're, yeah. But yeah they've never been horrible to me because I've sickle cell, never. Yeah if I've an attack they'd help me. Sometimes my friends even help me.
You know when I was in high school and stuff they'd be like, 'Misha you know that you can't do this so don't do it'. And ok then. So they'll all definitely, definitely help. Yeah. They are all good. They are very supportive as well. Yeah for people that don't know about sickle cell and don't know how it feels but they still support you and you know, encourage you when you're saying that. You can't do this so don't do it. Use wisdom. It was good, it was really nice.
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- Lucy is doing her AS levels, plans to do A-levels and wants to go to university. She lives with her parents and younger sister. Ethnic background/nationality' White British.
And they know that you have diabetes, do they know what to do in case you go low or?
I've spoken to my friends about that, I went away with my friend last year and I, she didn't know most of what we had, most of what I'd told her a few years ago about my diabetes and she, she did sort of make sure, she was very worried because if something did happen to me, we're in a foreign country and, the local language, she hadn't learnt the local language I had so, it wouldn't, she thought it wouldn't be that good [laughs] if I passed out, but she kept an eye on me and she sort of made me check my blood all the time and she made sure I done my injections and, when we actually, she went out one night and the food was awful and it, because it was a school trip the, none of us had taken money out for the meal we were like driven out all this way to this meal and it was really, really bad and because it was already paid for none of us had any food, any money on us really, and she like took me out and made sure I had a proper meal and she was, she was a good friend, so my friends like unless I really sit down and talk to them they probably wouldn't be that sure what to do and I think they do worry a lot if something did happen they wouldn't know what to do, but they do get me to check my bloods when they think there's something wrong so they're good [laughs].
When you have your highs you can feel very, very ill and you don't wanna go to school and, you don't want to do this, and you can get a little bit angry with people but, you, my friends have been really good they've helped me get through it and they've helped me become less angry [laughs] with them when I'm really high, but also they've been good when I'm low because you can get again really sick but you, you sometimes can't make decisions and you just become really unaware of your surroundings and they're, you do need friends to help you then 'cause you can cry as I do a lot when I have a lot of lows but, and sometimes just need someone there that can keep an eye on you and keep you and keep you well.
I think in the past is, is kind of helped you make friends, me make friends because they, they see 'Oh what is she doing, she's injecting herself'. And they come and ask you what you're doing and you say 'I've got diabetes and I have to inject myself regularly and sort of look after myself'. And, you get talking and then you make lots and lots of friends [laughs] through your diabetes, but I think.
'Cause I've been on lots of days out with my diabetes team and we've made a lot of friends with that, they've, they've been really good friends, my best friend is diabetic and I met her through the diabetes camps and every year we went away to different activity centres like PGLs, and we do rock climbing and have lots and lots of fun, that's got less and less in the recent years because there's a lot of problems with funding and they kinda question should we be going on activity weekends or should they be doing research into the way they, ways they can help us, so.
Some young people who were diagnosed in their teens really wanted to talk to their friends about it. A young woman who was diagnosed with epilepsy at seventeen describes one of her friends as 'her rock' for giving her unconditional support and being willing to listen. Another however felt that some of her friends felt uncomfortable talking about her recently diagnosed type 1 diabetes. Some young people said that they only talk about their condition to others affected by the same thing, and who could provide the friendship, emotional support and understanding that they needed. (Also see 'Peer support and voluntary groups'.)
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- Age at diagnosis:
- Rollo is a university student and has been living with ME/CFS since the age of fifteen. During term-time he lives in a shared household with other students but he regularly goes back home to see his parents. Ethnic background/nationality' White British.
I have a couple of friends, one friend, two friends, two friends, who would like to speak to you about it that have got ME, and we just sort of chat. What is interesting with that sometimes we just divulge into talking about how ill we are and it just sort of goes. You know the conversation gets a bit limited and I kind of like to think that I don't want to be boring and just talk about being ill. I like to think there is a bit more to me than that. So that is why I don't go to a support group. But I have a couple of friends that have ME and you know it is nice to have bit of solidarity with that. But, don't really talk about it, well we talk about it a bit and we support. But it is mainly about just talking and knowing that you can talk about other stuff as well.
Did you make those friends at University?
I met one of them at university and one through a friend who said that I should phone this girl up, [name], and I just phoned her up [laughs] and we became best friends just like that. So that was really nice.
That was before university?
That was when I was at school which was really great so I could speak to her when I was at school, because that is when it was really helpful. Was to be able to talk to her when I was school when I first' because I was really ill at school and I found it difficult and I could go to hers for lunch sometimes and that was really helpful that was a bit of a break, and someone who was understanding. It was nice.
But you other friends you don't sort of like to talk to them?
Not really. I don't want to be rude, so I don't want to be kind of really offish with them and them thinking they have done something wrong. Then I explain I am a bit tired. But we are not going to all sit round and say so my legs hurt today and this hurts today and do you know I really feel crap [laughs]. I am really not going to do that. But I let my friends know when I am feeling ill and stuff because they need to know and church I let them know when I am really ill so that they can pray for that and that sort of thing. Yes I talk a bit about it. But I talk in depth to my mother about it and leave it at that really. Because it is a bit boring. I am not sure I really want to know about how ill my friends are if they are ill, you know, so [laughs] so I think I just sort of keep it to myself a bit more to save my friends from the boredom of it.