Table 4.

Quotes supporting the “Impact on daily life” theme of the patient experience of SSc-RP

Subtheme	Q	Subject	Quotation
Impact of SSc-RP on daily life
Daily activities	56	B2 S1:	You can’t sort of feel things properly, trying to do shopping, trying to get cards out of your purse and things you can’t touch it, trying to sign your name when you didn’t have to do the push button for the cards
	57	B2 S6:	I can’t even change the bed, I can’t take the sheets off the bed, I can’t put them back on the bed. Trying to put a pillow case on, especially because it’s cold you just can’t, your fingers just can’t do it, even though you’re willing them to do it, you just can’t do it.
	58	N1 S5:	Housework….The biggest problem was mopping the floors and sweeping the floors. It’s almost like I cannot get a grip of the … the, er, mop stick and the broom to actually sweep right, because I tend to close my hand real tight around it when it … That’s when it affects the most.
	59	B2 S9:	I say, and I say to him don’t put the toothpaste back tight, don’t put the washing up liquid back tight because I can’t click it to get the washing up liquid out…. I mean some things I can still undo with my teeth, but not jars. I haven’t got that big a mouth to do a jar, but little bottles, and water bottles I do with my teeth because I can’t undo them.
	60	B2 S1:	I think sometimes with the gloves …. it actually makes it more difficult anyway for holding. You know you wear the gloves to warm your hands up but then you can’t grip properly
Social & Leisure	61	B2 S6:	I can’t walk my dogs…because I can’t hold the lead, I’m frightened that I’ll get so far and my fingers won’t be able to hold the lead once you get going. Even with the gloves on.
	62	N2 S2:	I love going out to eat but when I go I bring the thickest coat and gloves that I can find and I’ll still be miserable. I can’t even really enjoy myself. I’ll be like, “I’ve got to get out of here. It’s so cold.”
	63	B1 S6:	I used to climb two or three times a week, and I had to stop that because it kept happening while I was climbing. I had a couple of quite nasty falls, so I had to stop that. And that was basically just loss of sensation when you’re clinging to a rock face.
	64	N1 S4:	… if it’s real cold, obviously, it does. It affects it [social life] severely, I mean, you know, you can’t … There’s certain hobbies like playing videogames, or maybe woodworking or things like that, where it just doesn’t. It just doesn’t work like it used to..
Work	65	B2 S6:	I work in a library and like you say with the air conditioning if I get under the air conditioning and suddenly go straight there, I’ve walked from a nice warm place out of the office into the library, smack straight away it goes. …you can’t move the books, you can’t get the book back in because your fingers just can’t physically move because it’s that sore.
	66	B1 S4:	I felt really bad because I’d been there longer but there was staff coming in, I’m on more money than them, and I’m waiting for them to finish their job off for them to come and help me start my jobs. So I actually left last year.
	67	N1 S3:	Well, by the time I was sick, I was self-employed, I had started a little business of my own. But yes, it shut me down. It … I had to employ other people to do what I was doing, so yes.
	68	N3 S3:	I had a supervisor and I had to put gloves on and I learned to type in the gloves….She called me into her office and…she grabbed her phone and said “now I’ve got a picture”. I looked at her, she said, “huh, it’s not that cold, I can’t believe you have gloves on in here.”…And I’m like “okay, what did you call me for?” Because I had to learn to deal with people’s reactions… I had to just stop being embarrassed about that and just walk around and put your gloves on wherever you go, if they look, they laugh.
	69	B2 S5:	Well I just never told my employer….Because I wouldn’t have been able to do my work….I used to put three lots of thermal linings on in gloves and I used to freeze but I had to do it because that’s what my job was.
		INT:	So were you worried about telling your employers in case…
		B2 S5:	Yes, because they would have said well don’t bother coming back Monday.
Family	70	P1 S5:	I feel very bad, because then I get angry, I get cranky with my family, my poor husband, you know, just because it’s hurting so bad and he’s never going … to understand that pain of just going into a grocery store
	71	P1 S4:	especially if he’s [spouse] with me and I have episodes…I’m just, come on, I’m just very short with him or whatever…. if I’m alone I just deal with it, but sometimes I do tend to take it out on him maybe a little bit.
	72	B2 S9:	I used to take him up and give him a bath, and now he says, “No, not nanny, let mummy and daddy do it, not nanny, she’s too cold.” So I can’t bath him because my hands are too blue and they start as soon as I’m going up the stairs….So I don’t bath him anymore, it’s a shame. That’s a big thing to lose that is, yes.
	73	N3 S1:	I won’t ever show that to them because I’m supermomma (sic) but you know, when they’ve gone to school, I kind of think about it and, you know, it’s getting to the point I can’t even tie a shoestring.
	74	B1 S1:	My daughter is just laughing at me. She understands to a point but she doesn’t understand the pain and I think the frustration of it.
Loss of normality	75	B2 S5:	..it’s a combination of the pain and the numbness, the not being able to do normal things. It would be lovely to sort of turn the clock back and … be back to what I was like when I was 18, 19 [years old], go in the sea and not come out blue, sit in the garden after the sun goes down at 6 o’clock

Q refers to the numbered quote cited in the text. P1 denotes Pittsburgh, group 1; N1, N2, N3 denotes New Orleans groups 1, 2, and 3, respectively; B1, B2 denotes Bath groups 1 and 2; S# denotes subject (participant) number within each focus group.