Table 3

Participant quotes relating to theme B: Negative impact of pain

Limited and altered participation in education and leisure
Sometimes I can’t go out because it hurts so bad, so I have to cancel plans or I can’t go to school cos it hurts too bad. (P7)4a
It can be difficult to concentrate sometimes, especially if you have like a headache. (P11)4b
It affected my wrists obviously straight away, cos I was tryna write, so I couldn’t really write much. In my exams, I had to type everything up because I couldn’t use them. (P4)4c
Right now, my legs hurt but that’s cos I’ve been, I dunno, I’ve come back from school so I’m tired. (P11)4d
It was like my school trousers….those brushing on my legs like really hurt it. (P1)4e
I’ll just do something and it just really hurts so I tend to be a lot more careful when I do like, sports, like hockey and also karate, so, I just tend to take it a lot easier on those things. (P6)4f
Had to stop doing PE because that made [the pain] really bad. (P7)4g
Exercising in general is just something that I’d theoretically like to do but it’s kind of difficult. (P2)4h
If I'm trying to walk with like some friends or something, it it’s very painful. I don't want to stop everyone else just because I'm in pain. So usually, I just walk alone and I can have my own break. (P8)4i
I can’t walk very far without being in a lot of pain, which affects me quite a lot because a lot of my friends, like, walk fast and far. (P9)4j
My friends used to go down town and spend the day there and do shopping and now like I couldn’t, I couldn’t barely last a few hours, a couple of hours or just come home and everything’s aching. (P4)4k
Going to the cinema and stuff, a lot of times I have to shut my ears cos it’s too loud or, like the bright lights I find, like too much. And even going out sometimes, out of my, like my front door, with the sun, it kind of just, like really hurts my eyes. (P4)4l
Limiting basic daily activities
Stops me from walking…just stops me from anything simple. (P12)5a
Going up stairs is a big problem. (P2)5b
(The pain) only stops if I just stop moving… It sort of just kind of makes you think what’s the point of just going through it…I could withstand it but I don't see the point of withstanding it. (P8)5c
(The stomach pain) feels like it’s like throbbing. Kind of, and like just like, tensing up really hard, um, but yeah, it like stops me from like eating and stuff. (P1)5d
Stomach aches where [they] can’t eat for weeks. (P12)5e
I couldn’t even like, brush my own hair or anything. Like my parents had to do it all for me and like, help me like shower, like, do like everything, like, normal people should be able to do….even like, just like, walking up like stairs and that like, I’ll always be in pain like in my legs. (P1)5f
(Pain) can like affect your sleeping as well, so, like for me, I find it really hard to sleep. (P1)5g
Negative impact of pain on mental health
I mean the only time [the pain] sort of stops is when I'm completely relaxed. (P8)6a
As soon as I kinda start moving, it will just get worse again and then I get worried, when I get home, what the aftereffects is gonna be like. (P4)6b
I had to go months without like, seeing my friends and just being like bed bound, so like, I used to have really like, on my own and like alone and, that’s my - my anxiety got even like worse then and like, because I was only around my mum, that’s all, that’s the only person I wanted to be with then, like doing anything without her I’d have like really bad panic attacks. (P1)6c
You know at my worst with chronic fatigue, it’s when I’m at my complete, y’know, lowest with my mood…sometimes with the pain it’s like, sometimes it can feel a bit like throbbing, um, and that can just be really like, you just wanna cry….you wanna breakdown about it but it’s like you know, you’re just holding it together. (P11)6d
I do get quite miserable sometimes from it. (P10)6e
I think it just brings your general mood down cos it’s just like, y’know, just adding to the list of things to be annoyed about. (P11)6f
When I’m uncomfortable it makes me feel really agitated. (P9)6g
No one’s gonna be happy when they can’t move from bed. (P1)6h
It makes me upset because I can’t do things that everyone else can do. (P7)6i
You see so many things happening and obviously when you go on your phone, you see everyone moving on and like, doing all these life, life goals that they wanna do. And I’m just… yeah, I’m just behind everyone so…it does get to me a lot. (P4)6j
I wanna…not be in pain all the time but yeah I do think I have missed out on a lot that other people my age are doing. (P4)6k
Pushing through despite the pain
I’ve just gotten kind of used to it now, so I don’t really, I don’t even notice it. (P11)7a
Most of the time it’s just like an irritant and I’m just like I’m always in a bad mood. (P11)7b
I don’t, I don’t tell anybody if I’m in pain, I just keep going. (P5)7c
I went to a festival… I was in pain, but I was like, I don’t want to miss out on it. (P1)7d
I kind of just tell myself to get on with it and [exasperated laugh] keep pushing through it, which probably isn’t always the best thing to do. (P5)7e
I hate using chronic fatigue as an excuse for anything y’know, I don’t wanna let something define me, control me, and I feel like if I just get along with it, you know there are worse things going on in the world, like there are people staving I can live. (P11)7f