A-Z

Arthritis (young people)

Friends and social life

In this section young people talk about friendship. They describe how arthritis sometimes has an impact on their social life, how friends can support them practically and emotionally, and the things they do with friends for fun.
 
Having fun with friends
Having arthritis doesn’t mean that you have to stop having fun with your friends. Some people may find that arthritis doesn’t really affect their social life and they can carry on doing most of the things they enjoy. This can happen when people’s symptoms are not too severe or when their medications work well. People may also find that they can still join in with activities if they take it easy. Tom went paintballing for his friends 18th birthday. He asked them to give him a chance because he couldn’t run and kneel down like the others. Rebecca doesn’t feel that her arthritis affects her social life because it’s not so bad she has to stay in the house lots. Joseph went out less when he had arthritis but when he went into remission he had the “freedom” to do what he wanted.

 

Ruth's arthritis didn't stop her from playing in the street or going to the park, but she had to...

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Ruth's arthritis didn't stop her from playing in the street or going to the park, but she had to...

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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And how did your friends at school react?
 
Pretty well I think. I mean I think they, they, they always knew that there was something, [name] was different, you know, [name] was, there was something wrong with [name], she can’t walk as far, she doesn’t do gym. That was one of the main things, you know, she doesn’t do sports. I mean I could walk a fair distance but if they were going to go all round the mountains and going a long way, I couldn’t get to go with them. But I think there was a fair amount of, of just acceptance and taking it in their stride, at that age. At sort of 5 and, and 6, as I say I could still do all the normal that kids do, I could still play and laugh and go out and play in the street or go to the park or, I mean that’s basically all we did at that age around here. I sound really old saying this, we didn’t have computers and a lot of things to keep you indoors these days. We just used to go out and play in the street and play in the park and talk a lot of nonsense and things like that. So I think they just took it in their stride really, at that stage.
 

Sometimes people are determined to socialise and meet up with friends, even if they’re in pain or fatigued. Some push themselves so they don’t miss out on important social events like school proms, parties, and holidays.

 

Charlotte Z was determined not to miss out on social activities like going to the school prom....

Charlotte Z was determined not to miss out on social activities like going to the school prom....

Age at interview: 17
Sex: Female
Age at diagnosis: 16
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Okay then so can you explain how arthritis has affected your social life?
 
Well before treatment well it didn’t really affect it as much as it probably could have because I didn’t let it, like I still went even though I was advised not to, like my parents didn’t want me to and I probably shouldn’t have, I still went on holiday with my friends and when I was really bad and I still went to Prom, I still went to the summer parties, the end of GCSE things. I still joined in. Although I couldn’t, although I had to sit down and probably didn’t do half as much as what I used to and was asleep most of it, I was still there so I wasn’t missing out. But then towards the few weeks before diagnosis I was basically in bed but my I’m fortunate enough to have a best friend that would come down and spend, even though we weren’t doing anything she didn’t mind that as long as she was like with me. So I was fortunate enough to have friends so I still had a social life even though I was in bed. So yeah it has, it didn’t really affect it too much. 
 

If people are in too much pain or have mobility difficulties they may struggle to do some of the things they enjoy, such as sports or clubbing.

 

David had to stop playing golf when his arthritis got worse. Since stopping his friends from home...

David had to stop playing golf when his arthritis got worse. Since stopping his friends from home...

Age at interview: 21
Sex: Male
Age at diagnosis: 21
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I mean with my friends at home, before I had the disease I was quite active. I used to play golf a lot but not with my friends at home, so I kind of got to know people at the golf club when I played with them and forever when I when I was playing golf I was always saying, “Oh, come and play. It’s really good. It’s really good.” And they said, no, they don’t want and it’s not until after I got the disease, they go, quite recently they’ve started to play. 
 
So now they want to play I can’t but when I wanted them to play, they wouldn’t play.
 
Okay.
 
So I guess that was one kind of obstruction but apart from that, unless it involves sports there’s not much restriction with the exception of going out, you know, clubbing. So those two things, they’re a bit of a hindrance but everything else is okay really.
 
The kind of.... Do you generally feel like you’re missing out on anything or?
 
Yeah, I try you see I try to convince myself that it’s not much that you’re missing out on and it they understand that, you know, it would be nice just to be able to do things that they do without having any kind of obstructional barrier because, you know, you get you get access to experiences that you wouldn’t otherwise have. So and it’s on those things that, you know, friendships kind of strengthen and bonds create and but a part of me regrets it but I’d like to think because I’ve known those people for as long as I have that it’s not much of an issue to them. So that that’s my kind of solace in that really so.
 

Missing out on social activities can make people feel frustrated, upset and depressed. When Elizabeth was younger her school friends stopped inviting her round for parties and sleepovers because she was often too tired to come. This made her feel “excluded” and “lonely”. Elly felt “separate” from the people in her school because she was unable to go outside and stand with them (see ‘Emotional challenges’ and ‘Coping with emotions’).
 
Some of the people we talked to found different ways of relaxing with friends, such as shopping or going to restaurants. If you’re having a flare up or don’t feel well enough to go out then you can still have fun by inviting friends to your house. People talked about cooking for friends, chilling out and watching DVDs, and chatting. Ryan found it uncomfortable sleeping at his friends’ houses because he didn’t have his special mattress so they now stay at his instead.

 

Elizabeth has close friends that understand her. If she isn’t up for going out for the day they...

Elizabeth has close friends that understand her. If she isn’t up for going out for the day they...

Age at interview: 18
Sex: Female
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You have less friends but you have closer friends that understand you more ‘cos you think well I don’t really need you, and I don’t really need you but I’ll have, I’ll stick with you ‘cos you know you get me. I’ve been with like two of my best friends since primary school you know, they still know me and we went to the secondary school together. Still know me and if I say to ‘em tonight, “You know I can’t go out tonight, I feel too tired.” They’re just like, “Yeah, sure. Let’s meet up another day.” Or you know “Can we just do this and stay inside because I’m, my joints are hurting,” she’s like, “Yeah, sure.” 
 
So no definitely closer friends more than more friends and plus I’ve learnt if I feel lonely then I won’t go out with them, I’ll invite them here or do something with them and organise like a day or something which is suitable for me. So instead of like “Oh I don’t really want to go walking around [city],” I’ll just be like “Why don’t we go to my house, watch some films, maybe go out to the local pub or something.” Just something that I’ve developed my things around here. And then everyone was like, “Oh when are you going to have the next meet up at your house?” If you make it fun, so then they like it, so I’ve found that a good way of like keeping with people and stuff.
 

Alcohol
Some medications are known to interact with alcohol and cause serious problems. For example, drinking alcohol whilst on methotrexate can cause liver damage. You should always seek advice from your doctor before you drink.
 
Drinking alcohol, or going to places where alcohol was drunk, was a particular concern for some of the young people we spoke to. They explained that drinking was a big part of youth culture, especially at university. Sometimes people couldn’t drink because of the medications they were on but felt the pressure to drink in order to fit in with their friends. This could make people feel isolated if they are not doing things that are seen as the ‘norm’.

 

Lu discovered that there was a “massive pressure” for people to drink at university. She felt ...

Lu discovered that there was a “massive pressure” for people to drink at university. She felt ...

Age at interview: 26
Sex: Female
Age at diagnosis: 13
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But maybe that’s something that I’m just really sort of lucky to have. Now it’s a bit different at work because I’ve quite recently started, there’s only like one person that knows I can’t drink, so he’s constantly on the lookout now, so he’ll, when he’s pouring my drink he’ll just pour something that we pass off as vodka and coke, but it’s not, it’s just coke. Or you know I’ll get to my third drink and he’ll be like, “Okay, have you had enough?” But yeah I’m lucky in that sense. But yeah there is a massive stigma, there’s a massive pressure, definitely at university, even at school, later on at school, even now there’s a pressure to drink. But you’ve just got to be strong willed enough to be like, “Well look, I’m having you know, no I’m not drinking tonight,” or, “I’m gonna have two, but it doesn’t mean that I can’t have a good time.”Or that I’m any less of a, you know a better person for it. ‘Cos you know if you’re still fun then what’s, what’s the issue really?

Some people didn’t like to go to places associated with drinking like pubs and clubs. For example, David Z said that he felt “selfish” going to a club. He couldn’t stand for long or dance with his friends but didn’t want to stop them from having a good time. Others were happy to go out with friends and stay sober or have the odd drink. They could still have fun without drinking and felt it was better than staying home alone. People talked about taking part in drinking games at university but having soft drinks or chocolates instead of alcohol or nominating somebody to take a drink on their behalf. When Lu was at university she kept her arthritis a secret and told people she couldn’t drink because she was on antibiotics when she wasn’t. When she started work a colleague used to give her cola and pass it off as vodka and cola. Rebecca didn’t watch how much she drank when she went out. She liked to “let loose” at the weekend and “have fun”. She also finds it frustrating when everyone around her is drunk and she is sober (see ‘Alcohol, smoking and illegal drugs’).
 
Talking about arthritis
Talking about arthritis is easy for some but can be difficult for others. People sometimes worry what their friends will think of them and how they will react. Some of the people we spoke to kept their arthritis a secret for a while, or chose only to tell certain friends. They were sometimes happy to talk about the condition with old friends but didn’t tell new friends until they got to know them better. Cat didn’t know that her close friend also had arthritis until she asked her for sponsorship to run a marathon. She said, “We don’t go round shouting about it”. Tom was open about his arthritis but didn’t want to come across as “attention seeking”.

 

Tom isn’t embarrassed about his arthritis and is happy to tell people about it when it’s relevant...

Tom isn’t embarrassed about his arthritis and is happy to tell people about it when it’s relevant...

Age at interview: 18
Sex: Male
Age at diagnosis: 14
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How open and honest are you about arthritis to people that you meet?
 
I’m fairly open. I mean I try not to attention seek. I think, I feel that I attention seek sometimes, but my Mum says that I never ever moan so she’s like, ”You don’t attention seek at all,” but I wouldn’t tell somebody unless it was completely relevant, like for example if I met somebody I wouldn’t ever tell them unless we went out doing something active like, like a couple of weeks ago I went out paintballing for my friends 18th, and I was like, “I might, it might hurt me because I’ve arthritis, so if I’m kneeling on the floor a lot or running around that will hurt me I suppose, so go easy on me.” 
 
But I don’t really shy away from it, I’m not embarrassed by my condition. I don’t think anybody should be because it’s nothing to be embarrassed about and everybody has different things. And I think has life has gone on over the years I’ve realised that more and more people do have these things, I mean when you’re little you think everybody’s completely healthy and I thought at the time that I was the only one that had a long term condition. But then I found out that, especially when you go on the school trips, lots of people have medication with them. Like this one girl had it ‘cos her blood was too thin or something and this other person had this because of various things, I don’t know. But you just realise that no-one’s completely healthy all the time. And it just makes you who you are.
 

Friends can react differently when they learn that somebody has arthritis. David Z’s friends didn’t change how they acted around him when he told them about his diagnosis. He said this was partly because his friends knew enough about his condition and didn’t feel the need to change. He also felt it helped that he didn’t look like he had arthritis.

 

Charlotte Z's old school friends still want the 'active', 'bubbly' and 'happier' Charlotte back....

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Charlotte Z's old school friends still want the 'active', 'bubbly' and 'happier' Charlotte back....

Age at interview: 17
Sex: Female
Age at diagnosis: 16
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Oh I think my old friends find it harder to accept that I was now different, and because I would, I was always the one that organised things, the one that was like really active. Did all the sport, I was the active one, the bubbly one and then all of a sudden I couldn’t do anything. I couldn’t move. My best friend had to dress me, I mean on holiday she had to dress me, she had to help wash me and on the loo and stuff and that’s not something you expect at 16 to be doing. And it’s not, you don’t, it’s kind of, I think I was lucky, I’m lucky to have her because not many friends would do that so that was okay.
 
But I think they’ve found it harder to cope with like they treat me differently compared to my new friends who can, when I’m at college with them they can see if something’s wrong, I’ll go quiet and they can see that something’s wrong, and they’ll offer to carry my bags and get me a chair and stuff and then they don’t have to ask to go down the stairs, they’ll just take the lift with me. And they won’t leave me on my own or anything like that. And because they haven’t known me any other way they, they’re kind of just like, “Ah that’s how Charlotte is,” whereas my other friends have known me this other way, and when I was obviously quite upset and sad they, they are obviously gonna prefer the happier, they wanted me just to be happy again so I think they found it hard to accept and which is fair enough and I can understand that. But yeah, they’ve all been really good about it and they’ve all been really supportive. And the fact, because they live so far away because obviously it was boarding school, I used to go up there quite a lot but now they come down to me a lot which is nice of them.
 
 

Charlotte X was worried what her friends would think of her diagnosis. Most of them were...

Charlotte X was worried what her friends would think of her diagnosis. Most of them were...

Age at interview: 14
Sex: Female
Age at diagnosis: 11
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You said that you were upset when you were first diagnosed?
 
Yeah.
 
Can I ask what you were upset about?
 
It’s mainly being like different from everybody else. ‘Cos like a lot of people don’t like being different and I’m one of them and I find, I like to like fit in with a specific group of people, but like if I feared like if any of them knew that they wouldn’t wanna like talk to me or be my friend anymore. But that’s not the case so.
 
Okay so have friends been understanding?
 
Yeah. They’ve been really great.
 
How have they learned about arthritis?
 
Well they basically hear me talking about everything and they’ve just got to listen. And then they listen and then they learn about it and then they say, “Oh what happened with the consultant?” And I tell them and then they understand and then they go, “Oh that’s good,” or “What medication are you on?” and everything. So they’re kind of like, they, they support me quite a bit actually yeah.
 
Okay, have your friends changed since you had arthritis or are they the same friends?
No. Most of them haven’t, there’s just one or two people that don’t really talk to me now, because like I have this and they hang out in other groups, but I don’t really like care ‘cos it’s their fault, it’s their loss, if they can’t be my friends I can’t be theirs. Simple.
 
And is that because of the arthritis or is that the kind of normal social school thing?
 
Because of my arthritis.
 
It is?
 
Yeah.
 
Okay why do you think that is?
 
I don’t know. I think they can’t get to grips with me being like different, just like I couldn’t.
 
So they stopped hanging around.
 
Yeah. Their loss.
 
Absolutely. Does arthritis have an impact on kind of making friends?
 
No ‘cos I don’t really like tell them until I actually know a bit about them and they know a bit about me normally, as in like what I like to do, where I like to go and what I’m interested in. When I get to know them and they start becoming like my close friend then I sort of like tell them, “Oh yeah, I’ve got arthritis.” And they’re like, “Oh okay, really?” And then like, “Okay.” Yeah. They don’t really mind.
 
Do they ask what arthritis is?
 
They ask what it is and then I explain it to them. But we’re normally talking for about an hour maybe an hour and a half.
 
So it’s quite a long time then.
 
Yeah.
 
Let me guess do they say, “My Nan’s got that.”
 
Yeah.
 
Do you correct them?
 
Yeah.
 
How does it feel to have somebody say that?
 
Well it kind of makes me laugh a lot ‘cos it’s mainly associated with older people, not like young people but babies get it, young people get it, everybody can get it at some stage in the

Some of the people we spoke to said that even though their friends knew that they had arthritis they didn’t always understand what it was and how it could affect them. People with arthritis sometimes tried to look at things from their friend’s perspective. Kerrie explained that it’s hard for friends to know how she is feeling because arthritis “isn’t necessarily on the surface all the time”. She hides her pain from her friends but gets frustrated when they don’t understand why she does certain things. Cat used to get very frustrated with her friends but now realises it’s not their fault that they don’t understand. She said that it’s difficult for people to understand unless they have arthritis themselves or are close to someone with arthritis.  Michelle found it hard to look at things from her housemates’ perspectives. She didn’t understand why they don’t talk much about her arthritis.

 

Michelle's friends accept that she can have difficulties walking but her housemates don't seem to...

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Michelle's friends accept that she can have difficulties walking but her housemates don't seem to...

Age at interview: 25
Sex: Female
Age at diagnosis: 13
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Just, I’m still a bit self-conscious, still lack confidence in some respects. And I know that arthritis gets in the way a bit if you like sometimes. Like if I’m going out with friends now and I need to get a taxi. Like we’ll be at one end of the road for example and need to get to the other, and I just can’t walk. So I’ll just say, “I can’t, I need to get a taxi. I’m sorry, you know, but I really can’t walk.” “Oh, that’s fine.” Depending on who I’m with, they’re just like, “Oh, yes, yes, that’s fine. We’re, we’re coming with you.” And, you know, generally people are quite accepting. But I’m still finding that even sort of adults and some of my housemates, they don’t really know how to, to handle it. Like I’m not sure, sometimes I’m not sure if they think, “Oh, it’s a bit weird. I want to keep away and keep my distance from, from talking about the arthritis.” Or maybe they don’t want to upset me. Maybe they don’t know, maybe they don’t know how to talk about it. I don’t really know, and I find that when my housemates are talking to me about it, it’s like walking on eggshells, they tread very carefully with their questioning. And I’m surprised they don’t talk about it more with me, because I’m always...
 
In a way they don’t want to upset you maybe?
 
Maybe. I don’t know. Because I’m seeing it from a very insular point of view. I’m not kind of seeing it from their point of view. Because it’s really hard for me to do that, being the one that’s got the arthritis. So I, I can’t kind of be outside the box looking in.
 

Some people felt that a good sense of humour was needed to deal with the realities of arthritis. Caitriona is happy to make fun of her condition and call herself a “cripple”. She said using humour is one way of educating people about the condition. Elizabeth said she had a dark sense of humour and this made people want to talk to her and get to know her. She uses humour when talking about arthritis to new people to make them feel comfortable around her. David Y said that some people can’t hide the fact they have arthritis so there’s an increased likelihood that people will ask questions about what is wrong. He said that people are more likely to ask questions if someone is in a wheelchair or the problem is visible. This can help ‘break the ice’ when people meet.
 
The ways friends help out
Some of the people who talked to us described the different ways their friends helped out. Friends can offer emotional support when times are hard – they listen to your troubles and try to understand what you are going through. Friends are people you can trust and talk to and who won’t talk about you behind your back. If you are having a bad day friends can “brighten it up” by speaking on the phone, coming round your house to cheer you up or taking you out shopping or to the pub. People talked about friends being there when times were hard and sticking by them if their condition got worse.

 

Kyrun’s friends have stuck by him since his diagnosis. They treat him as one of the lads and went...

Kyrun’s friends have stuck by him since his diagnosis. They treat him as one of the lads and went...

Age at interview: 16
Sex: Male
Age at diagnosis: 6
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The reason they’re good is because they’ve stuck by me since I was diagnosed. I’ve grown up with them. They treat me as anyone else. They, we take the piss out of each other so much. And all the lads when I was in hospital for that six months solid, I had my High School Prom, sounding American then, but yeah, my secondary school Prom and they spent the whole day with me, like trying to get me upbeat to go, and they all like got changed with me there, helped me…
 
…And then they’ve all like sorted out like my drug treatment as in to get a nurse to come with me because you’re not allowed to like take medication to, out of the hospital on your own, so they said, “It’s Ky’s prom, it’s gonna be like a highlight hopefully a highlight for him and you need to come.” And they organised, and I didn’t even know, I thought I was gonna struggle that night but they sorted that out and they sorted out all the transport out for me. So it was amazing.
 
Good times. Was it a good night?
 
They enjoyed it ‘cos they all got drunk. But I absolutely hated it because I felt so uncomfortable, everyone was staring at me, the teachers wouldn’t leave me alone at all. They asked all the same questions and there were like 20 of them, so they were like, “Oh how are you feeling,” “How are you feeling?” “How are you feeling?” “How are you feeling?” Then, “Oh what’s going on?” “What’s going on?” “What’s going on?” I was like, “Why don’t you just tell each other? So just like leave me alone. I’m not here to see you; I’m here to see my friends having a good time.”
 

Friends at school or college may help out by carrying heavy things for you like bags and lunches, or by writing in your book if you are too sore to do it yourself. They find you chairs and go in the college lift with you so you don’t have to be by yourself. Friends sometimes know when you are having a bad day without you needing to tell them. They give you a lift if you can’t walk and let you have the last seat on the train.

 

Ryan’s friends understand that he sometimes can’t go out to play because his knee hurts. Ryan’s...

Ryan’s friends understand that he sometimes can’t go out to play because his knee hurts. Ryan’s...

Age at interview: 12
Sex: Male
Age at diagnosis: 8
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Yeah. Well my mates didn’t know what I had. But now they know and they come over and they understand what it is and like if I say I’m not playing out ‘cause my knees hurting they’ll go okay and they won’t get like annoyed with me. ‘Cause they’ll understand like more how I feel and they, at the start of it they didn’t know what it was. 
 
Like sometimes like well I can’t carry my bag ‘cos it’s hurting my shoulders or something, my mates will carry it to my lesson or something.
 
So who, who started this, was it the friends that came forward or did the school help to find some friends?
 
No just my normal friends that I had even before it, I had my arthritis.
 
Oh. And were these friends that you had in junior school, in primary school?
 
Yeah.
 
And they came to secondary school with you, is that right?
 
Yeah, some of them did.
 
So they understand what it’s like. Do you tell them what it’s like or do other people...?
 
I do normally. It’s easier to tell ‘em now than it was at the start.
 
Do they understand?
 
Yeah.
 
So what kind of things do they do to help you?
 
They carry my bags and like make sure I’m alright and that, and stuff like if I’m getting my dinner and it’s too heavy they’ll carry it for me to the table and that.
 
And do they help you in class with any work? 
 
Sometimes yeah.
 
What kind of things do they do?
 
Well like if I can’t write and they’ve finished theirs they’ll help me write it and I’ll tell them the answers and that and stuff. They’ll help me do my work if I don’t get it.
 
And sometimes you say they sleep over?
 
Yeah.
 

Friends can turn a difficult or embarrassing situation into a fun one. Anna had a bad flare up during a school trip to Germany and forgot her crutches. Instead of staying in the hostel her friends had fun carrying her around and acting as her crutches for the day. Ryan’s friends used to argue about who got to push his wheelchair first. He was worried that his friends would break the chair when they played with it, but found it funny when they struggled to use his crutches.

 

Elizabeth was embarrassed using a wheelchair and mobility scooter in public but her friends had...

Elizabeth was embarrassed using a wheelchair and mobility scooter in public but her friends had...

Age at interview: 18
Sex: Female
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I get a lot of invitations to Thorpe Park because I can get Fast Track.
 
How about that.
 
Yeah I get a lot of invitations for that. And then I’m like, “Well I can’t really walk around with it,” “Oh we’ll push you in a wheelchair, it’s fun.” So it’s really good you know, ‘cos I, when I was on crutches I had to go around in a wheelchair if I wanted to go for a long period, I’d find that so embarrassing, it was the most embarrassing thing ever and especially going around [city], you know, going to the theatre, it wasn’t really built for disabled people, the streets weren’t. You know the transport wasn’t so there was a lot of challenges in that, but if your friends are pushing you then it’s a lot more fun. ‘Cos I remember in year 8 we went to London Zoo and I wasn’t good, and I got, had to get a mobility scooter. And that is so embarrassing if you’re like 12 and you’re on a mobility scooter. But you know my friends just saw it as a ride and it was just fun you know. There, I was driving it, they’re sitting on the back, they’re falling off. So it’s, it can be embarrassing but if your friends are there then they make it funny.
 

David Y explained that people who queue jump often do so because the disabled access entrance is located in a different place to that of the “normal” entrance. This can make queue jumping a negative thing and make people feel different.
 
Meeting up with friends can distract people from the pain. If Rebecca is in lots of pain she avoids going out because she gets grumpy and struggles to follow conversations. However, if her pain is more “tolerable” then going out with friends takes her mind off the pain.
 
Loneliness, worrying about friends and making new friends
Not everyone had problems making or keeping friends, but some of the people we spoke to said they had had difficulties in the past. Tom had good friends but a girl with arthritis told him she didn’t have many friends because people were afraid of catching her “granny disease”. Dan had a similar problem growing up and stayed in lots because people didn’t want to play with him. Sometimes people at school miss lots of classes because of their arthritis and sacrifice spending time with friends in order to catch up on the work.
 
Sometimes the young people we spoke to worried about the impact their arthritis had on friends. Cat was once told she was “boring” on a night out because she didn’t have the energy to be her usual “bubbly” and “chatty” self. It frustrated her to think she may come across as boring or “in a mood” when she’s very tired. Sarah worried that her condition “could drag someone else down”. Some people didn’t like to talk about their arthritis with people they didn’t know. Charlotte Y didn’t like it when her friends point out other people’s disabilities. She has difficulties herself and doesn’t feel like she fits in with her friends when they refer to others as “disabled”.

 

Zoe sometimes feels like a “burden” on her friends. If she’s off school for a while she feels...

Zoe sometimes feels like a “burden” on her friends. If she’s off school for a while she feels...

Age at interview: 15
Sex: Female
Age at diagnosis: 11
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I think you’d have to be like a brick to not let it get the best of you sometimes because you live life and then you, some days you kind of stop and think, “Wait, this is this is happening. I’m not like my friends. I can’t do this kind of stuff,” If I want to go shopping say with my friends I’ll sit down a lot, which sort of makes you feel like a burden to them I suppose and it can make you feel if you’re off for a while, like an outcast from your friends because they’d just go off planning stuff and you think, “Oh, just being left out.” But some days it’ll be fine because your friends and that come and see you or like give you a present, which is unexpected. But yeah, some days it will just get the best and you’ll think, “Oh god.” 
 
And you’ll end up thinking about everything so you get yourself like proper worked up and depressed.
 

Some people found that they made new friends when they moved schools or went to college or university. When Elly was at school in the UK she was known as the girl with arthritis, but when she moved to America she had a fresh start and became the “English girl with the funny accent”. Sometimes people had different groups of friends. For example, David Y had friends he could study with, friends he could go out with in the evening who didn’t drink, and friends he could play in a band with. Elizabeth found it easier to make new friends through existing friends. This way she can joke about her arthritis with her existing friends and introduce her condition to the new person using humour. People also talked about meeting people by joining youth clubs or university societies or going abroad to study.

 

Dan didn’t play with the other kids in his street when he was younger. He said they were scared...

Dan didn’t play with the other kids in his street when he was younger. He said they were scared...

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Can I ask, if it’s not too sensitive, why didn’t you leave the house?
 
Well, when I were younger a lot of people in the area were scared to be around me because they were worried that something would happen and they wouldn’t know what to do so I were never invited to birthday parties or anything like that. So I used to spend all me time in the house.
 
Is that difficult for you to talk about? I can move on if you want to.
 
No, I can talk about anything really.
 
Okay. Just wondering what that what that felt like?
 
Well, as a kid it were very hard. You’re just lacking friends and that. And then it I found it hard for me little sister she because she were very protective over me then and it started worrying her a bit but then I started, when I turned sixteen I found a youth centre for disabled kids and that’s when I started going out more and doing more and it gave me more confidence.
 
Was it hard coming to the youth centre the first time?
 
Yeah, because I didn’t know anyone because it weren’t in the area. It were only like five minutes drive but because I didn’t know anyone it were something different but then I enjoyed it that much, I eventually started going on training and I became one of the volunteers there as well.
 
I made plenty of friends there and that and every, it were specially designed to bring abled bodied and disabled people together so it were a mixture of everyone really and it just gave me more confidence.
 
Was there a difference in how you related to the able bodied person to disabled bodied people?
 
No, but I had started feeling more hopeful because it were, when I started getting older it made the younger kids used to seeing people in wheelchairs so I thought that’s kind of helping others.
 
 

Elly didn’t enjoy the first two years of university as she couldn’t drink and go clubbing like...

Elly didn’t enjoy the first two years of university as she couldn’t drink and go clubbing like...

Age at interview: 21
Sex: Female
Age at diagnosis: 9
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At university I didn’t really enjoy the first two years because you go to university, everyone gets drunk, goes out to clubs, gets in at whatever time and okay cool. And I’ve done that but then at the same time, you’re on methotrexate so you can’t drink, so you don’t have any stamina to go and why would I want to go and stand in a club, when I’m just gonna be there in pain, everyone’s dancing, and they don’t care ‘cos they’re drunk and I’m the only one who’s sober and who’s like, “My feet really hurt.” So it’s, it’s that awkward thing where in the first year that’s all anyone cares about, and so it takes a while to fit in. But it’s fine, get there. And now I love it and from my year abroad I’ve made amazingly good friends with my course mates and I am as happy as a clam at University and it’s really good. It just took me longer to get into the groove than I think a lot of people. But it’s worked out now quite well. I’m happy.
 
Yeah. I take part in the University Royal Naval Unit. I did Sea Cadets before I went to university, and that is my other group of friends who you know, that sounds really bad though because obviously the, you combine the military and students that you’ve got at the drinking fest, but we do things that isn’t just drinking obviously, we learn about things and then I go to sea quite often.
 
I’ve struggled with that because you know it’s things like stand on the bridge for two hours and you know take us, be officer of the watch take us here,” and so I struggle with it but they’ve always been a lot more understanding and previously was very understanding, he was a really nice guy and would always make sure I could do it, even if it meant I couldn’t do this bit for example. 
 
And so I found that was my other group of people and I think that if I hadn’t joined that I probably wouldn’t, I don’t know if I’d have left university ‘cos I’m kind of too proud to do that, but I really wouldn’t have enjoyed it all. 
 
But now, since my year abroad I mean we’re all the language kids who went away and you because you’re in another country, even though we were in different cities we formed really close links and we, you know, you got to go and travel and see this city without having to pay for a hotel.
 
So we all did things like that, and so now I live with one of them. I live with one of the Navy people as well, so you form other links, and yeah I’m linked with them now because we would go and travel around and that, yeah I think you find other ways of making friends with people. And that’s I guess what I did and it’s worked out quite well.
 


Last reviewed November 2018.

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