Table 2 Selected quotations from included studies

Activities; domestic

“As soon as my back goes: that’s it, I don’t mow my lawn for a couple of months.” (Mick,40) [13]

“Things like [cleaning the] bathroom and shower and stuff, because you have to get right in and you’re bending over when you’re scrubbing.” (Angela, 35) [13]

Activities; Leisure, rest, and sleep

“I would go in the garden and do a bit of this and a bit of that, you know, but now I just don’t bother. … I used to go and play golf… to relax, and things like that.” (Subject 1) [46]

Relationships

“The worst thing about this pain is that you are in pain, yet everybody else suffers with you.” (Patient 1) [46]

Relationships; damage and isolation

“I’ve given up on holidays because it spoils it for everyone else” (Patient 4) [39]

“Your wife says “come on, get your act together” and that makes you feel bloody terrible.” (Patient 13) [39]

Relationships; family and cohabitation

“My oldest son, a four year old, says, “What is it Daddy, you used to hold me in your arms, why don’t you now?” (Anon.) [34]

“My wife even turned on me, thinking it was all put on. She came into the bedroom one morning to find me flat on the floor, unable to move, and she naturally assumed that I was putting it on. From that point on I’ve just lived on my own.” (Colin, 46) [72]

Relationships; sex

“Sex, sex is very important. It’s very important” (Patient 4) [46]

“I mean you don’t look ill, you’re not flat on your back, so you know, is it an excuse, ‘oh I’ve got a headache’, do you know what I mean?” (Ruth) [55]

Relationships; social

“You go out to a restaurant, halfway through a meal, because you’ve been sat for too long, I have to get up and go for a walk.” (Anon.) [41]

“…we won’t go anywhere now because of that [being boring with little to talk about except pain]. I get too embarrassed and I just hate being in company and you always get onto that subject [pain]. And if you’re out for a social evening the last thing people want to hear is what your misery, so I just, that’s why we don’t go out often.” (Becky) [55]

I don’t go out, I don’t answer the phone, I live at the back of the house and I dread it when the postman comes. … I don’t know what to say, or anything, I just feel embarrassed. You just think ‘what do they think of me?’” (Kevin) [63]

Work; anxiety

“My reading is poor, I can’t spell for jack… it’s like I’m in a no-win situation … All my work comes physical” (Patient 12) [32]

Work; off-sick

“I don’t look sick, I don’t limp, I don’t have a cane, I’m not in a wheelchair, I don’t look terrible … I look good. So [the people I work with] could have the perception that she’s not really sick, she’s just taking days off” (Participant 14) [30]

Work; financial

“I didn’t know what to do … they [doctors] said ‘there’s nothing there, there’s nothing there whatever’… so I was scared of chiropractor, and of course I couldn’t afford it either, so there was massage therapy - I couldn’t afford that either. Which one is the cheapest? Acupuncture! So I looked through the Yellow Pages and there was one and I said I’ll give him a call.” (Participant FG5) [73]

“I can’t go off-sick. I can’t afford to go on half-pay [incapacity]. So … so that’s a real dilemma and then I think: God, I have to work until I’m 65! I’ve got a mortgage to pay. How am I going to cope? … You start thinking: what if it never goes, right? What if it gets worse? What am I going to do?” (Anon.) [43]

Stigma; deligitimisation

“I remember at my sickness interview - you can see the disbelief in the manager’s eyes, and I’m thinking OK well …” (male, aged 37) [42]

Stigma; diagnosis

“..but you can’t see pain, so they don’t know do they? So they automatically assume that there’s nowt wrong with you” (Alice) [55]

“I just don’t appreciate them trying to tell me that the pain is in my head. You know, in so many words they tell me the pain is in my head and I have feelings in my back … like I say they feel it’s in my head or I’m fronting my back pain.” (Anon.) [37]

“…it always seems sub-consciously that malingering thing, you can’t put your finger what it is, you haven’t got a broken leg or … You have to have stitches to show for it or something…” (Carolyn) [61]

“It’s frustrating sometimes when [going to] a doctor -- yes they’ve studied it, but they haven’t lived it” (Participant FG2) [73]

Stigma; meeting expectations

“A very arrogant [doctor] sat me down and said `What the bloody hell do you expect me to do if you are still working?’ And because I was still working, obviously my back wasn’t that bad. But it was.” (Sufferer 1) [28]

“When I’m good, I’m really good, so you walk around and people say `Why did you retire?’ I’ve had some people sort of either directly or imply `look you’re up and walking around, what’s your problem?” (Alex, 57) [61]

Changing outlook; quest for diagnosis

“I found out since that it’s not been diagnosed correctly. They’ve been giving me the wrong exercises for somebody with what I’ve got now. For 10 years I’ve been doing exercises according to this type of pain, when it’s been aggravating the other thing that was never diagnosed, it was always there but they never looked at it.” (Jean) [61]

Changing outlook; psycho-emotional

“I mean, I’ve had days and weeks where I’ve just got depressed over it, and I think, well, I can’t be bothered, there’s no point, it’s not getting better.” (Anon.) [41]

“Oh aye, aye, I’m down in the dumps most of the time as [wife] knows. If it wasn’t for the missus I’d be bloomin’ terrible I think.” (Will) [64]

“I’d love that [being alone on a desert island] … but to be away from people and not to have to be something else you’re not, that would be bliss. … I’d still be a miserable old git but it wouldn’t matter, its only when other people come around that it matters.” (Tony) [63]

“Oh yeah, its in two parts, the old good bit, and the pain bit, which has gone wrong. … One bit works, the other doesn’t, like a section has gone wrong, when it’s bad and I can’t move properly, it’s like it’s not part of me, it won’t obey.” (Lynette) [56]

“I felt like a wasp with a very tiny waist. Just imagine! Such a waist may snap anytime! It was horrible, I just couldn’t move! I didn’t think I’d make it.” (Anon.) [38]

Changing outlook; adaptation and acceptance

“I would like to take medical retirement … it would be nicer to actually say to people ‘I’m retired’ rather than ‘I’m off sick’ (Reg) [48]

“After a bad night I can’t settle, but the only way I find if after you’ve taken the pain killers, and the pain is still there, is to actually slide off the chair and kneel facing the chair, taking all the weight on my knees” (Anon.) [64]