Table 2

Quotations

The early RA symptom experience“Well, I probably had it for a year, but I didn't realise what I had. I used to go skiing, and once in a while my feet would hurt, like a big toe or something. I would think that, well, maybe the boots were too tight or the socks were too tight.… Then one day, all of a sudden my joints all swelled up. All over. And they were so tender and horrible. My legs swelled up and my hands were so sore I couldn't touch anything. When my feet swelled up, I finally went to a doctor.”29 (pp. 292)
“Instead of getting better… it gradually got worse… and I started wondering if it might be arthritis.”44 (pp. 232)
“My thumb just swelled up and a couple of my fingers just kind of puffed out. When I first noticed it, I just thought it was from sailing. I would get better for a while then it came back after a month or two and didn't go away.”29 (pp. 292)
Making sense of early symptom experience and prototypes of RA“You see when you have chest pain you automatically think either indigestion or heart and you go quickly to see the GPs (general practitioners). People have fear of heart attacks or cancer. With the joints you tend to put explanation. If they ache you automatically think that you are either tired or done too much.”35 (pp. 1009)
“Diseases related to internal organs directly influence eating and sleeping and even influence the life span. Disease of the arms and legs do not cause serious effects on lifestyle.”38 (pp. 1798).
“I heard about it. I thought it was if you were getting on a bit, fifty or older.… I knew some get fingers twisted.”33 (pp. 1579)
“Well at first I thought I'd broken, chipped the bone in the finger, with it being a knuckle. I thought, I bet I've banged it, really, because I do bang my hands a lot sometimes and I thought I'd chipped it and I thought, ‘oh it'll go off’. It was months, really, before I got round to going to the doctor because we got married in the July and I didn't go and see the doctor before the end of August, beginning of September. I just thought it was one of those things that would clear up. It never dawned on me it would end up like this.”32 (pp. 171)
“… aware of swelling to fingers of the right hand… waited two weeks to see if condition improved.”27 (pp. 257)
Minimising the impact of symptoms“Instead of getting better… it gradually got worse… and I started wondering if it might be arthritis.”44 (pp. 232)
“I ignored all these things. Ill's for other people not for me.”33 (pp. 1579)
“When I noticed it was preventing me doing things and it interfered in my sleep, it woke me during the night, then I thought, gosh, this is not right, something needs to be done about this.”35 (pp. 1008)
“I'd had a bad toe for twelve months. It kept swelling up and was ever so sore and painful. And then all of a sudden I noticed that I couldn't do simple thing like wringing out a face cloth or a dish cloth. I kept thinking ‘this isn't right’, and then joints started to ache.”42 (pp. 79)
Speaking to others, gathering information and seeking alternative treatments“Friends and family would say ‘what's the matter with you? You were fine and fit. This is not normal. Why don't you seek help from a priest?’ They said ‘Look. We think someone has put a curse on you’.”35 (pp. 1009)
“If you complain too much about arthritic pain, people will think that you are a hypochondriac… even my husband believes that I exaggerated my pain because he thinks that arthritic pain is not so serious.”38 (pp. 1798)
“I think the hardest part… was that I would tell people about this and they would blow it of so I had a tendency to kind of keep it to myself.”44 (pp. 233)
Accessing health services and attitudes towards healthcare professionals“If I'm not very well I get straight in touch with the doctor ‘cos that's what he's told me like, if you get a cold, don't leave it ‘cos the cold will turn and you'll have a chest infection, so don't leave it. And of course when I had the arthritis, I had the pain in my legs, I think it was about two, three days and I was up to the doctors to see what it was like.”33 (pp. 1579)
“Most males, it's an effort just to get them to go to the doctor”36 (pp. 648)