. 2020 Sep 1;23(6):1388–1411. doi: 10.1111/hex.13122

Table 1.

Summary of conceptual domains and dimensions of the lived experience of self‐managing rheumatoid arthritis

Domain of experience		Dimensions	Illustrative quotations
(i) Cognitive‐emotional (what we think and feel)	1	Acceptance, lack of	‘I always thought I’d wake up [the] next morning [and] it'd be gone. But that never happens and so you do learn to accept it in the long run and I think I handle it better now … by knowing m[y] limitations’. ²⁹ ^(p200) ‘I ignore it, basically. Try and get on with day‐to‐day things… I bury my head in the sand. I don't…even bother treating the symptoms’. ⁴⁰ ^(p209)
	2	Anger, frustration, irritability	‘I use [running] as a way of getting rid of the frustration and the anger; I just run and run and run until I can't run anymore…I just feel like just punishing myself. I know I shouldn't because I know I’m going to pay for it in the long run’. ⁴¹ ^(p334) ‘When you feeling in pain and you're aching and you're tired, you haven't got a lot of patience with the children which really gets me down'cos I think, you know, I shouldn't be shouting at them it's not their fault … Everything you do, you know, just normal household duties [and] looking after a baby is really hard work’. ⁴² ^(p201)
	3	Blame, cause	‘It just seems random… well, to me… to me it just seems random’. ⁴⁰ ^(p207) ‘In my opinion, stress is the main reason why my fl are comes about. Every time I stress about things, it just sets off’. ⁴⁰ ^(p207)
	4	Social comparison	‘Now, compared with the other ladies who had deformities in their hands, I was in a better condition…When I see people who are in a worse condition, I'm thankful to God that I am still not at that stage’. ¹⁴ ^(p246) ‘Everybody around me enjoys their healthy and happy life, except only me. I never do [a] bad thing to anybody. I always try to do good for everybody in [my] whole my life. Why does the God give me such pain? It's unfair’. ⁴³ ^(p242)
	5	Depression, sadness, despair, suicide	‘It's a vicious cycle with RA. You feel depressed, so your arthritis acts up more, and the more it acts up, the more depressed you get, until you break it somehow’. ¹⁴ ^(p294) ‘I would have taken my own life. Lousy, I couldn't get dressed, nor even could I cover with the sheets. It is a very bad pain. Living like that is not worth it’. ⁴⁴ ^(p07)
	6	Hopes and fears	‘Yes, I’m thinking of a woman, a woman in a wheelchair who cannot move and is totally handicapped. I hope this won't happen to me. And then I think about the future. When it starts like this, how will it continue?’ ³⁴ ^(p68) ‘Perhaps I can slow it [RA] up…get it to stabilise’ ⁴⁵ ^(p239)
	7	Optimism, positivity, humour	‘What has been most helpful to me (laughter) a sense of humor’ ³⁷ ^(p512) ‘I think, I have begun to think really positively, that I will get better’. ³⁴ ^(p68)
	8	Religion and spirituality	‘I go to church every day to pray to God to recover from the disease’. ⁴³ ^(p243) ‘…I believe in God and it's that what keeps me going, so I don't worry. God's got the best for me; I met my husband through God’. ⁴⁶ ^(p197)
	9	Self (concept, esteem, efficacy)	‘One feels one is worth less compared to before…’. ³² ^(p34) ‘But I can't stop and live… I have to overcome so to speak…through building up in some way a confidence in oneself, that you can fix this. I think that you can be quite capable if you focus and most things are able to be solved with a little thought’. ⁴⁷ ^(p97)
	10	Shame, guilt, embarrassment	‘I can't even open up a bottle of mineral water on the plane, it's embarrassing. So I got to call for the air stewardess to help me to open it up. People think that I am trying to get fresh’. ⁴⁸ ^(p383) ‘I feel guilty for not being able to be with them (daughters), neither physically nor emotionally’. ⁴⁴ ^(p9)
(ii) Behavioural (what we do; action taken)	11	Adjustment and adaptation	I think even when I’ve had a swollen knee I’ve got on the bike and just pedalled more with one leg than the other ⁴⁹ ^(p699) ‘The person with this old body of mine hasn't recognized that he has to adjust, he hasn't got time for it…’. ⁴⁵ ^(p32)
	12	Planning, pacing	‘I knew that I’d be doing a lot of walking so I made sure that the next day was empty’. ²⁸ ^(p700) ‘It is a bit like planning your life. It is like this motto for the day, to plan your day, plan what you are going to do. It is like that, you always have to base your occupations on how the day is and what you feel like doing, what you can do’. ³³ ^(p87)
	13	Self‐care	‘I want to manage on my own, even if it takes more time. To be able to take care of your personal hygiene and to get dressed of your own accord is number one, so that I can be independent of others’. ³¹ ^(p85) ‘…now I am working on becoming relaxed and loosening, and it is not easy for me. But I work a lot on it. Maybe I am behaving too modern now: I take belly dancing classes now, in order to relax physically as well as mentally’. ⁵⁰ ^(p663)
	14	Help‐seeking	‘It's always the last port of call coming to see the rheumatologist. I go through absolutely everything at home before I come and see them’. ⁴⁹ ^(p701) ‘I have to kind of accept it and just do the best that I can with it [RA]. Learn to ask for help which I’m not very good at doing that. Where I wouldn't ask people for help, now I do’. ³⁷ ^{(pp511‐512)}
(iii) Social (interaction with others and roles)	15	Invisible illness	‘It's almost like, I’d like a visib[le] sign of my disability… in other words I’d like a white stick or I like a wheelchair, because of my age and my look, people don't see me as disabled, why should they?’. ⁵¹ ^(p115) ‘When they come [the children], I pretend I’m not doing so bad. I make myself up, I dress up, for they wouldn't notice’. ⁴⁴ ^(p9)
	16	Domestic roles	‘As a man you should be the main person doing the lawns, the gardens, round the house’. ⁴¹ ^(p333) ‘Everybody helps out, I don't have a choice. I don't think my kids miss out; my little one may be, because I can't go out with her, swimming for example. But my sister and husband and other family members take them out. My husband does a lot of the housework now. He does work hard to keep things going’. ⁵¹ ^(p112)
	17	Employment	I mean I worked for nearly 40 years, there is a certain loss of identity when you can't work anymore… When you can't work, not only have you taken away your sort of daily structure, you have taken away a large part of your social life ⁵¹ ^(p115) ‘Why don´t you work in the profession you are qualified for? Oh, that's because I have a joint disease. I really don´t bother to explain. They don´t understand anyway’. ³² ^(p34)
	18	Economic	‘Using a swimming pool has become very expensive. Before, it only cost 10,000 Tomans per session. Now, if you add the transportation cost, you have to spend about 25,000 Tomans for a session. I cannot afford it’. ⁵² ^(p245) ‘…the first line of treatment is a few hundred dollars a month. When you're deeper into your disease it's $1,500 a month. A lot of people are not aware’. ⁴⁸ ^(p386)
	19	Gender	‘It puts you in a position where you have to ask for help and it's not a very sort of macho thing’. ³⁰ ^(p332) ‘I had to cut my hair off, my hair used to be long… I couldn't manage it, so it has to be short, so it doesn't need blow drying because I can't get my arm above my head. Yeah, this type of practical things take[s] away some of your femininity, or change[s] who you are’. ⁵¹ ^(p115)
	20	Loss, loneliness, isolation	‘I live on my own…so I can rattle around, chuck stuff and just be thoroughly frustrated and just lay in bed all day’. ⁴¹ ^(p334) ‘I used to invite people over very often. These days, since I cannot take care of my guests the way that I used to, I don't like to have guests at my house anymore’. ⁵¹ ^(p244)
	21	Personal and social relationships	My husband helps me but I know deep down that he doesn't get any joy from me. I don't have the energy to be with him. Got no appetite, nothing. I’ve lost my appetite for life! ⁵³ ^(p2651) ‘Because of their attitude, I don't socialize with my relatives. They annoy me. For example, I go to visit them for an hour and they start asking me about my illness and comment about my life. I can't take it. No one will tolerate such behaviours’. ⁵² ^(p5)
(iv) Environmental (setting in which we manage)	22	Access and built environment	‘It is really difficult for me. I live [on] a higher floor of a building and have to climb two flights of stairs every time I want to go somewhere’. ⁵² ^(p245) ‘I can't reach anything on my desk any more. Everything [must be] within 12 or 15 inches of the front of my desk’. ⁵⁴ ^(p228)
	23	Weather and temperature	‘In the winter, I cannot come here [the clinic] by myself; someone has to bring me. If I want to come by myself using public transportation, then I have to change buses. Exposure to cold weather is not good for me; it makes me sick’. ⁵² ^(p245) [RA is] ‘like a weather forecast. If it's going to rain, I get a bit of pain; if we get snow or frost, I get quite a bit of pain’. ⁵⁵ ^(p207)
(v) Physical (the body in which we manage)	24	Body as ill, deformed, disabled	‘My body is changing so strangely’. ⁴³ ^(p242) ‘What bothers me most are my deformed hands, and being self‐conscious is worse than the pain, but my hands are something I have to live with, and by the grace of God, I keep going’. ⁵⁶ ^(p284)
	25	Symptoms	‘By the end of the workday, I was crying in excruciating pain while scooting up and down the stairs at home, and it took almost a year before I felt somewhat normal’. ⁵⁶ ^(p284) ‘I do suffer quite a lot from fatigue, so it really depends how much energy I have to do that and then also if something's quite sore I might not want to, you know, I might cancel a shopping trip if I’ve got a very sore knee or ankle or something, knowing that it's going to aggravate it ’. ⁴⁹ ^(p700)
(vi) Technological (technologies used to manage)	26	Assistive devices and aids	‘I was such an opponent in the beginning, not wanting to have a wheelchair or a [powered wheelchair]…but now I couldn't be without it, it's changed my life a lot… When it's really difficult I just take my [powered wheelchair] and go out, just enjoying it, meeting people and disengaging my pain’. ⁵³ ^(p2651) ‘Assistive devices are important in the household, for instance. Really important! I have got the full kit since the 80s. I can't cut things at somebody else's place, so I have to bring my own stuff or, you know, a nutcracker on all my journeys to be able to open bottles, for instance’. ³¹ ^(p87)
	27	Health‐care professionals and services	‘[The HCP] didn't have any specific recommendations for me. Only if I asked a question, they answered it. Nothing more’. ⁵² ^(p245) ‘I still lean on my doctor telling me it's going to be alright’. ³² ^(p35)
	28	Medical treatment	‘When I started with the medication, I saw the light in the tunnel…Now I’ll be cured… Now I’m ready, now it's good! And then I get it into my head and set my ambitions very high. But it vanished ‐ because it didn't turn out as I thought it would’. ⁵³ ^(p2650) ‘I started to try natural things and there was a time I completely stopped the prescribed medication’. ⁴⁴ ^(p11)