1. Struggling to affirm a sense of my self | My body is now against me (30, 32, 33, 40–42, 60, 61, 68, 72, 73, 83, 95–97, 99-104, 106, 107, 109, 112, 117, 118) | I mean ... a normal person isn’t aware of their legs because they just say ‘right walk’, you know their brain tells them to walk and they walk, whereas when you’re in pain you’re aware of them all the time (62). |
The old me is my real self (28, 29, 31–33, 37–39, 41, 68, 69, 76, 78, 83, 93-97, 99, 103, 106, 107, 113, 117) | It’s like living with this [person] who follows you around all the time ... You’re cursed with him and he gets in the way, he embarrasses me, he’s unsociable and sometimes downright rude ... I know there is no ‘person’ ... but it’s not me, that’s not me (31). |
I am becoming isolated from others (29, 31, 32, 34, 35, 38, 41, 42, 48, 61, 62, 65, 69, 73, 76, 78, 86, 91, 95, 96, 97-99, 101, 102, 104–107, 109, 112, 113, 117, 118) | I have two small children, and I don’t want them to say when they’re older, we couldn’t do this or that because my mum was sick. They’re entitled to better than that (42). |
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2. Altered construction of time | My days are unpredictable (28, 29, 32, 41, 42, 60, 66, 83, 89, 97–99, 101, 103, 105, 107, 110, 112) | One day you feel like doing something. Then, all of a sudden, bang! The illness is so fickle, so capricious (106). |
My future will not be what I thought (29, 32, 41, 69, 72, 78, 89, 92, 95, 96, 101, 108, 111, 118) | I worked all my life and now I can’t enjoy my life … it’s (the pain) taken over ... this is my future (78). |
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3. Struggling to explain why I am suffering | It doesn’t make sense there is no medical reason (28, 30, 32, 43, 69, 70, 77, 78, 86, 92, 96, 99, 101, 103, 108, 111, 113–115, 117, 119 | When I had a broken arm, it was wonderful, they all rushed towards me to help me in the supermarket and I didn’t feel a bit guilty because it was in a plaster and it was OK. But now you ... look perfectly alright and you do feel a bit of a fool (91). |
No one believes me because I have nothing to show for it (29, 32, 35, 36, 42, 43, 64, 73, 78, 85, 91, 92, 94, 96, 99, 101, 103, 104, 111, 113, 115, 117) | People think that you’re swinging the lead, because it’s not a visible thing, so many people use it as an excuse ... whenever a person says they’ve got a back problem it’s ‘yeah, yeah’. I remember at my sickness interview — you can see the disbelief in the manager’s eyes (89). |
There must be some other reason (28, 29, 32, 34, 39, 70, 73, 89, 93, 94, 103 108, 113, 115) | I feel that, all these rigid things that you try and put in place to protect yourself, quite often are actually a problem that you have in your mind rather than your back. So I think your mind and your back are quite closely linked (93). |
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4. Struggling to negotiate the healthcare system | I can’t see the point of going to the doctor again but I must (32, 35, 36, 38, 39, 40, 42, 43, 66, 69, 78, 79, 80, 85, 87, 92, 101, 105, 101, 105, 111, 119) | I just get passed [around] ... I don’t have any faith really, what I want to find out is what is causing this pain all through my body and I seem to meet a blank wall (43). |
I need someone to listen to me and understand what pain has done to me (38-40, 42, 43, 66, 67, 69, 80, 85, 86, 87, 92, 99, 104, 111) | You’re feeling like you are unimportant and insignificant, feeling as though you’re taking up their time, their time is more valuable than yours ... I think quite often they don’t take into the equation that maybe you do understand ... and you have got a few brains (85). |
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5. Struggling to prove that I am credible | Should I hide or show my pain? (28, 29, 31, 36, 39, 41, 42, 60, 62, 69, 70, 73, 89, 94, 96, 99, 101, 102, 105, 111, 113, 114, 116) | Someone says to me: ‘Well you look so good, it is impossible to see that you are suffering’. Perhaps the reason is that the more I suffered, when going somewhere, the more make-up I put on, so no-one would notice (69). |
I need to show that I am not like other people with pain (32, 37, 38, 64, 86, 94, 114) | I think there is an essential difference between my pain and theirs, but as long as I’ve a somewhat doubtful diagnosis, the only difference is that I complain more: I become the person who has pain because I need or want to have pain (37). |
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6. Moving forward with chronic pain | I now cooperate with my body and work with it (28, 35, 41, 63, 67, 68, 71, 72, 76, 85, 99, 100, 101, 103, 104, 106, 109, 112, 115, 116, 118) | Increase awareness and accept yourself as you are, just setting limits is something I worked with a lot. It’s not the boundaries of the world around that matter, it’s my body and the signals from it that have to give me advice (100). |
I am still me and can enjoy my life (28, 35, 42, 61, 70, 71, 68, 69, 96, 99, 104, 107) | When I finally did accept the fact that, okay, I wasn’t going to be able to work and that I was going to have to do things differently ... I shifted my energies ... to the stuff that gives me pleasure (96). |
There are other people like me that believe and value my experience (35, 67, 70, 80, 100, 103, 104, 114) | You know, it is so hard to have this illness ... but it kind of grew smaller when I noticed that others have it too and that I may talk about it ... earlier when I had severe pains I just kind of shrank in to myself ... you were finally allowed to talk about it aloud (114). |
I don’t have to hide my pain and can let people know my limitations (35, 69, 100, 104, 112) | Before when people asked how I felt, how it was, then I said okay, but now I dare to say more, straight out (100). |
I realise that I have changed but don’t need to continue searching for a medical answer (39, 41, 62, 75, 96, 99, 111, 115) | I came home with a diagnosis and [my brothers] said, ‘there is no cure, deal with it.’ They say, ‘you either live with it or you sit at home and mope about it. There is no cure, get on with your life.’ I’m like, ‘okay, guess I’ll move on then (96). |
I am confident to give things a go and make changes (67, 69, 75, 82, 85, 87, 96, 100, 104, 107, 113, 114, 117, 119) | You just keep experimenting. That’s all you do. You know, you hear of this, you try that, this works, that doesn’t work. This person suggests this, someone else suggests something else (87). |