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Table 4 Perspectives, subtheme ‘Normality’ and ‘Disclosure’ and associated interview excerpts

From: Experiences, perspectives and expectations of adolescents with juvenile idiopathic arthritis regarding future work participation; a qualitative study

QuotationIllustrative quotesParticipant nr
Subtheme: Normality
 15When I had to bring many books with me, it would cause pain in my shoulders. I could have applied for a second set of books, but then I would be so different from the others which I’m rather not.11
 16The school doctor asked me if I needed any adjustments. I told I had a pillow and a laptop and such on high school but that I don’t want any of it anymore. I just want to live a normal life.5
 17I want them to see me as I am, I don’t want them to treat me as someone who isn’t capable of anything.11
 18People often think I’m weak, that I will give up easily because I’m not able to do everything.3
 19The reason I’m not telling people, is because they immediately think I’m pathetic you know, I don’t like that at all. I don’t want to be pitied.22
 20I think it’s unnecessary to make such a big deal out of it. I’ve got JIA and I don’t think it’s a big deal so you shouldn’t think so either.19
Sub-theme: Disclosure
 21It depends on how I’m feeling. If I have a lot of complaints, of course I’ll tell, otherwise they can’t take it into account. But like now, I don’t think it’s necessary.5
 22When I’m graduated and I’m really going to work fulltime, I’ll tell straight away. Because you’ll work there every day and I might have to visit the hospital or something like that, then it’s important that they’ll know. But with a part-time job …16
 23“I think I’m less likely to be employed than someone who doesn’t have it. Because, they might think I won’t be able to walk for a long period or something like that, though I can do that easily.”6
 24I know for sure that they’ll think: “this is not someone we want to keep” … Because they rather not employ someone who’s sick, I’m certain of it.5
 25I think it will only work in your disadvantage, when you don’t tell having complaints. I think they (red. The employer) would appreciate you more if you do tell. And yes, I think they should know.8
 26If you tell straight away, then they’ll know from the start. Then if they hire you, they trust it will work out and then it’s ok. I think a company will have more faith in you from that point.2
Subtheme: Independence
 27It is my body, so I think, I should decide12
 28I might think about it, but if I think I can manage, I will listen to myself. I know my body better than anyone else.18
 29I will not become dependent of anyone else9
 30I think that the only person I need, is me.13
 31I knew I would be exhausted during the whole weekend. For example, when I had a party on Friday, I knew I couldn’t plan anything on the other days because I would need to rest.17
 32I asked the paediatric rheumatologist for a medical certificate and brought it with me to school and then I asked if it would be possible to shorten my school days because of my JIA.10
 33I advise to just organize things yourself and not just wait for something to happen. I’ve learned to ask for the things I need and to say when I need help instead of just ploughing on.18
Subtheme: Perseverance
 34I know I’m going to be in pain, but I’ll accept it, since I’m not going to put everything aside.11
 35Most of the time I notice directly (red. I pushed the limit) and then I’ll probably continue for some time. The day after, it’ll be much worse. And then I think: this wasn’t a smart move. But then again, I had fun and I’ll stay happy. Because when you’re always in pain, staying at home does not do you any good. You’ll become completely secluded.”21
 36I’m always attending school, even in my wheelchair, even on crutches11
 37At this moment, I’m trying to attend school every day, because it’s really difficult when I’m missing out on class. Even when I’m absent for only one day, I’ll miss out on so much. But I’m always trying to go to school, but sometimes it happens, I just can’t.8
 38I will do my job, even if I have to push through the pain, I don’t mind.1
Subtheme: Influence of JIA on career choice
 39I feel really passionate about this. And if you really want something, your body can try to stop you, but if you know for sure, you’ll just keep going3
 40If it’s going to cause pain, I can always quit. But if I don’t try it, I won’t know for sure.17
 41To me it doesn’t matter whether I have JIA or not, if I want to do something, I will.12
 42I’ll look for something that I would like and want to do. Of course I’ll pay some attention to what’s possible, but if I’ll take that seriously, I’m not able to do anything.20