Illustrative quotations from study participants.
| Themes | Quotations | Contributing Studies |
|---|---|---|
| Distressing appearance transformation | ||
| Disturbing facial changes | Ninety-nine percent (of my self-esteem) has been affected because of my face. I mean, if my face wasn’t disfigured like this, I call it disfigured, okay, or changed, and if I just had the scleroderma that didn’t do anything to your face, yes, I could handle that. It wouldn’t be as dramatic or drastic. It’s been such a bad change. But like I said, yes, this scleroderma to my face has just really, really pulled me down. I mean, just no self-esteem28. Because I think it is scarier; maybe because there is so much wrapped up in your face; it reflects your emotions, it reflects your feelings, it reflects your attractiveness. People are going to perceive you as stupid or intelligent... The face is much more significant in some way28. | 11–14, 17, 21, 25, 26, 28 |
| Stigmatizing sickness | A number of times people thought I had measles or chicken pox. I try to explain it’s not contagious12. I was teaching in a men’s school, and we had a large meeting, and the principal asked me to sit in the hallway during this meeting, that way, nobody would have to look at my hands. I said, “So do you even want me coming to the meeting?” “Well you have to talk.” “But you don’t want me in the room?” “Right.”15 | 11–15, 20, 21, 25, 28 |
| Unrecognizable self | Another participant described her worries saying, “Dying doesn’t worry me, but dying totally ugly or handicapped when I don’t recognize myself does.” She added, “I see differences in my facial structure already. I’d rather die before I don’t recognize myself anymore.”13 It bothers me because people who see me for the first time, I want to say, “This isn’t me. Let me show you what I really look like.” And the first thing I want to do is show them pictures [of myself before the facial changes]. “That’s what I look like.” Rather than saying, “Yeah, what you see, this is it.”28 | 12, 13, 15, 17, 20, 21, 25, 28 |
| Palpable physical limitations | ||
| Bodily restrictions | In describing the onset of scleroderma, one woman said, “It started with shortness of breath.” Upon bronchoscopy, she found she had only 25% lung capacity. She now has difficulty breathing almost all the time and is waiting for a lung transplant. Prior to having these symptoms, she described herself as leading an active life and spending much of her time outside working in her garden13. I don’t feel free, which naturally restricts my movements and breathing17. | 10, 11, 13–17, 19–21, 23, 25, 26, 28 |
| Frustrating mind-body disconnect | One participant summed up the challenge of coping with this disease when she said, “My biggest struggle has been that my mind has not figured out yet that my body doesn’t keep up any more. My mind thinks it should still be able to do what we used to do and you can’t”.15 | 15, 16 |
| Pervasive fatigue | My leisure activity is lying in bed. I feel that I never get enough sleep13. You don’t feel like going out. You don’t feel like doing anything. I’ve become a couch potato21. | 10, 13, 14, 17, 18, 21, 23, 25, 26, 35 |
| Disabling pain | ’Cause I’m scared something will touch it...; With the gangrene...the pain that you felt in your fingers as they were dying was so excruciating that you almost begged to say please cut it off21. The calcinosis hurts...in my toes, I can’t walk, I can’t wear sandals21. | 13, 14, 21, 23, 25, 26, 28 |
| Social impairment | ||
| Breaking intimacy | My husband deserves more. And I can’t fake it and I’m too dry to do anything about it21. I gave my [husband] a kiss. And he’s like, “No, give me a good kiss.” It was like, well, this is as good as it gets! (Laugh) I can’t pucker my lips. So just in that instant, he really, really hurt my feelings28. Eventually [my husband] left me. And it was devastating. Really devastating. Now, I didn’t want to be single. Because I had all these problems [including facial changes] and who was going to want me28. | 12, 17, 19, 21, 28 |
| Struggling to fulfill family responsibilities | I am ill. Why me? I could not stand up, walk, care for my children, cannot comb my daughter’s hair, cooking is completely difficult for me. But I should do all these11. My parents have always helped me; I cannot help them with anything18. | 11, 13–18, 20, 21, 26 |
| Maintaining work | Oh, it’s totally subsumed [home life]. I mean, that is a challenge because I got home at 6:00 tonight. Normally, this is about when I get home, and I can wash my face and go to bed right now. I mean, I could totally check out. I think my life is very skewed toward work because I’m required to be there, and home can suffer. But I try to work through it16. People like myself could cope with going back to work if you’ve got an employer that understands24. | 16–18, 21, 24–26, 28 |
| Losing independence | It is hard for me to open the tap. I told my husband several times that I could not open it since it was difficult for me. He ignored my words. So I have not said anything about it. He has not helped me11. I mean I hate to think of somebody having to dress me, or feed me. I mean I think that if and when that time comes, I think I will be probably the most depressed person on the face of the earth17. | 11, 13–15, 17, 18, 21, 23, 25, 26 |
| Navigating uncertainty | ||
| Diagnostic ambiguity | After being sick, or knowing there was something wrong, for nearly 17 years, I got a diagnosis of progressive systemic sclerosis, which I had never heard of. But I was so excited, I was so thrilled for this man to be telling me I had this disease! It was stupid, you know — to have an answer. It didn’t matter that it is a potentially fatal disease. None of that stuff mattered27. At first, I was scared out of my wits. I didn’t know what to do about it. Why was it all of a sudden spreading? What was going on? Is it cancer? I was told I had cancer, actually. And thank God, I didn’t. But scared, absolutely terrified, absolutely terrified. What was going on? ...And the [doctors] keep telling you, “There’s nothing wrong. It’s all in your mind.” That just made it worse. You think, “Gee, I must be nuts. I must be out of my mind.”28 | 13–15, 25–28 |
| Medically fending for oneself | However, even after receiving a name for these “mysterious” symptoms, some of them still felt uninformed. They stated that they did not understand the medical terms used by physicians and had to enquire several times. Some participants felt obliged to do their own research on the Internet. In many cases they had received disturbing information, as in the case of one woman who read of a life expectancy of five years14. | 10, 11, 13–15, 19, 21, 25, 27, 28 |
| Unpredictable course of illness | You get one thing under control and then something else pops up13. It was very hard, you don’t know what’s going on and the symptoms are developing, you know, you’re not stabilized. So you know, it starts with the Raynaud, then the acid reflux, then the skin, then it spreads. Then you get darker, then you know you’re getting them all. So you’re waiting for that day when you can’t breathe anymore or — but it hasn’t happened so that’s good26. It’s always lurking in the corner. What’s going to come next?21 | 11, 13, 15, 17, 20, 21, 26, 28 |
| Alone and misunderstood | ||
| Fearful avoidance of fellow patients | When I met with other patients and listened to them, I feel myself bad. They give me negative feelings. Some of them asked me to meet. I did not accept their proposal. I told them that you make me depressed and I could not cope with it. I do not want to meet with them so often11. When I was attending the support group meetings, there was a lot of patients that their symptoms were pretty far advanced, and then every once in a while, we’d go to a meeting and find out that nice lady down the road had already passed on. It was getting to where I almost hated to go because I hated to see people that I was getting to know getting worse, even though the support group was good cause everyone shared experiences, but on the other hand, it was frightening15. | 10, 11, 13, 15, 17, 21, 25, 26, 28 |
| Invisible suffering | ...scleroderma and Raynaud disease is something that nobody can see unless you are all crippled up. But with me, having Raynaud and scleroderma, people cannot see it. People say that you are looking good. Like with your family, if your family was interested in it or was into it by going to some of the meeting, then they would realize that you do have something bad. And it would help them [family] a lot to understand what is going on with me. ...you can talk to them and they think that you are doing fine when you are in fact not...People think, oh well, but they really don’t have a clue about what it is all about. Sure it is good to do things at this age, but it is really hard to do things in so much pain?23 | 23, 26–28 |
| Gradual acceptance and relative optimism | ||
| Adapting to change and accepting limitations | For instance, if it is hard for me to wash dishes, I find a proper sponge for my hand. There are many small or big sponges that I can hold. I could not prefer those with two levels. Because they are so thick and I could not wash the glasses with them. Firstly, I had difficulty in doing it but later I overcame this diffculty. Now I know that I should wash the dishes and I find the easiest way to do this. I always ask myself “how can I do this?”, “how can I cope with it?”11 After a family dinner on Sunday, at 5 o’clock, I am so tired. If I sit for 20 minutes, I’ll regroup. After having scleroderma for some time, I know how to handle this13. | 10–16, 18, 21, 23, 25, 26, 28 |
| Taking a positive spin | I can’t use my hands the way I used to...I can tell my lungs have gotten weaker...[compared] to the next person...I feel healthy...I’m the lucky one21. Having this, being so ill and near death made me a better person. I appreciate life. It’s precious. I work harder. I achieve more13. | 12, 13, 15, 21, 23, 28 |
| Cautious hoping | I had no idea what SSc was. I had no idea if I was going to die, be in a wheelchair, I had no idea… I saw a lady, I was 31 at the time, but there was a girl, probably in her 20s, that was in a wheelchair, and it looked like she was on her deathbed. She was so thin; she had oxygen, a wheelchair, and I thought, oh my gosh, that’s going to happen to me. But I kept on going to these support group meetings, and at one of the meetings, I met a lady who was probably about my age now and said she had had SSc for 25 years, and she was full of life and just going on, and I thought okay, I’m going to be like her15. I have faith in God…[who] has all power and if God wants this thing cured. He usually can do it like that21 | 13, 15, 16, 21, 25, 26, 28 |
| Empowering relationships | My husband tells me after 30 years of marriage, we are the same people inside, we just have different wrappers12. [My children] know that there’s a change in the way I look. But to them, it’s not a big deal because I’m still who I am on the inside28. | 10–16, 18, 21, 23, 25–28 |
| Valuing medical support | He was very concerned. He took my hand and told me what happens, and he was sorry that there’s nothing that he can do. He was very concerned. He had very good bedside manners. He was very good about it. Really explained everything, and he was very good. He was very comforting, really. He’s a very good doctor28. | 15, 21, 27, 28 |
SSc: systemic sclerosis.