Table A1.
Affirmations of illness experiences.
| My Experience with Sjögren’s Syndrome Is That | Agree | Somewhat Agree | Somewhat Disagree | Disagree | p |
|---|---|---|---|---|---|
| (1) A doctor sent me to another professional. | 51.6 (16) | 16.1 (5) | 6.5 (2) | 25.8 (8) | 0.08 |
| (2) I had never heard of this disease before. | 83.9 (26) | 0 (0) | 3.2 (1) | 12.9 (4) | <0.001 1 |
| (3) I try not to think about the disease or talk about it. | 35.5 (11) | 38.7 (12) | 19.4 (6) | 6.5 (2) | 0.004 1 |
| (4) I have not had support with my illness. | 16.1 (5) | 25.8 (8) | 12.9 (4) | 45.2 (14) | 0.081 |
| (5) The doctor told me that I don’t have to look for more information. | 9.7 (3) | 19.4 (6) | 6.5 (2) | 64.5 (20) | 0.001 1 |
| (6) I don’t understand some information from the internet. | 22.6 (7) | 19.4 (6) | 19.4 (6) | 38.7 (12) | 0.264 |
| (7) Sometimes I want to stop (or have stopped) the medication due to adverse reactions. | 35.5 (11) | 16.1 (5) | 6.5 (2) | 41.9 (13) | 0.779 |
| (8) I don’t know how I will feel tomorrow. | 74.2 (23) | 9.7 (3) | 0 (0) | 16.1 (5) | 0.001 1 |
| (9) My doctor doesn’t inform me enough about my illness. | 22.6 (7) | 32.3 (10) | 9.7 (3) | 35.5 (11) | 0.678 |
| (10) Some days I can’t open my eyes and the sun bothers them. | 54.8 (17) | 29 (9) | 6.5 (2) | 9.7 (3) | <0.001 1 |
| (11) The pain in my eyes motivated myself to ask to the doctor. | 29 (9) | 12.9 (4) | 6.5 (2) | 51.6 (16) | 0.187 |
| (12) I didn’t dare to ask the doctor more about it. | 19.4 (6) | 6.5 (2) | 25.8 (8) | 48.4 (15) | 0.023 1 |
| (13) People that don’t suffer this disease, don’t understand it. | 80.6 (25) | 9.7 (3) | 3.2 (1) | 6.5 (2) | <0.001 1 |
| (14) Even if I feel bad, I encourage myself and try to be independent. | 87.1 (27) | 9.7 (3) | 3.2 (1) | 0 (0) | <0.001 1 |
| (15) When I have a lot of pain I can’t do housework and my daily routine. | 58.1 (18) | 19.4 (6) | 3.2 (1) | 19.4 (6) | 0.008 1 |
| (16) It has a hereditary component. | 22.6 (7) | 25.8 (8) | 16.1 (5) | 35.5 (11) | 0.485 |
| (17) It bothers me to be constantly taking medicine, using drops, etc. | 67.6 (21) | 22.6 (7) | 6.5 (2) | 3.2 (1) | <0.001 1 |
| (18) I think that my illness will never end, that I will always be sick. | 74.2 (23) | 16.1 (5) | 0 (0) | 9.7 (3) | <0.001 1 |
| (19) I don’t say it and I don’t explain it to anyone because it is difficult to understand. | 29 (9) | 32.3 (10) | 12.9 (4) | 25.8 (8) | 0.492 |
| (20) This permanent disease generates other diseases. | 58.1 (18) | 19.4 (6) | 16.1 (5) | 6.5 (2) | <0.001 1 |
| (21) I don’t research on websites because there is information that I don’t like or scares me. | 25.8 (8) | 22.6 (7) | 12.9 (4) | 38.7 (12) | 0.489 |
| (22) I plan several things to do, but for fatigue, I only finish one. | 48.4 (15) | 25.8 (8) | 3.2 (1) | 22.6 (7) | 0.041 1 |
| (23) I have isolated myself socially. | 22.6 (7) | 25.8 (8) | 6.5 (2) | 45.2 (14) | 0.244 |
| (24) I live tired, living tired is very uncomfortable. | 51.6 (16) | 22.6 (7) | 9.7 (3) | 16.1 (5) | 0.010 1 |
| (25) I have lowered my efficiency in my daily activities. | 45.2 (14) | 41.9 (13) | 9.7 (3) | 3.2 (1) | <0.05 1 |
| (26) When I was diagnosed, I felt relieved because I already knew what I had. | 41.9 (13) | 3.2 (1) | 16.1 (5) | 38.7 (12) | 0.958 |
| (27) I feel joint pain and fatigue. | 71 (22) | 16.1 (5) | 3.2 (1) | 9.7 (3) | <0.001 1 |
| (28) It is very difficult to ask for an appointment with the doctor or specialist. | 54.8 (17) | 16.1 (5) | 3.2 (1) | 25.8 (8) | 0.052 |
| (29) With and without medication I feel the same, or worse. | 25.8 (8) | 9.7 (3) | 22.6 (7) | 41.9 (13) | 0.194 |
| (30) I can’t eat dry foods. | 54.8 (17) | 9.7 (3) | 22.6 (7) | 12.9 (4) | 0.01 1 |
| (31) I got used to living with pain. | 38.7 (12) | 29 (9) | 12.9 (4) | 19.4 (6) | 0.085 |
| (32) The treatments are expensive. | 83.9 (26) | 9.7 (3) | 3.2 (1) | 3.2 (1) | <0.001 1 |
| (33) There are doctors and dentists who don’t know the disease. | 54.8 (17) | 19.4 (6) | 6.5 (2) | 19.4 (6) | 0.014 1 |
| (34) I want, but i can’t cry. | 48.4 (15) | 6.5 (2) | 16.1 (5) | 29 (9) | 0.275 |
| (35) My doctor has always been very willing and responsive. | 54.8 (17) | 16.1 (5) | 16.1 (5) | 12.9 (4) | 0.005 1 |
| (36) I feel pain in my legs. | 67.7 (21) | 16.1 (5) | 9.7 (3) | 6.5 (2) | <0.001 1 |
| (37) I always need to eat sweets, gum or drink a lot of water. | 80.6 (25) | 16.1 (5) | 0 (0) | 3.2 (1) | <0.001 1 |
| (38) The system is hostile; they punish you for being sick. | 29 (9) | 25.8 (8) | 9.7 (3) | 35.5 (11) | 0.895 |
| (39) Sometimes I don’t have the energy to have sex. | 61.3 (19) | 25.8 (8) | 3.2 (1) | 9.7 (3) | <0.001 1 |
| (40) Sometimes I look good on the outside, so people don’t understand that I’m sick. | 83.9 (26) | 3.2 (1) | 6.5 (2) | 6.5 (2) | <0.001 1 |
| (41) Sometimes doctors don’t believe you. | 41.9 (13) | 19.4 (6) | 9.7 (3) | 29 (9) | 0.319 |
| (42) This disease is activated on the emotional side. | 67.7 (21) | 19.4 (6) | 6.5 (2) | 6.5 (2) | <0.001 1 |
| (43) When I feel bad, I try not to let them realize it so as not to worry them. | 54.8 (17) | 16.1 (5) | 12.9 (4) | 16.1 (5) | 0.010 1 |
| (44) My family is always aware of my illness. | 54.8 (17) | 9.7 (3) | 19.4 (6) | 16.1 (5) | 0.018 1 |
| (45) Those who work with patients are unkind and don’t put themselves in our shoes. | 22.6 (7) | 32.3 (10) | 22.6 (7) | 22.6 (7) | 0.785 |
| (46) I have not looked for more information, I only know what the doctor told me. | 12.9 (4) | 9.7 (3) | 9.7 (3) | 67.7 (21) | 0.001 1 |
| (47) I don’t believe everything that I find on the internet. | 45.2 (14) | 32.3 (10) | 6.5 (2) | 16.1 (5) | 0.011 1 |
| (48) I have been learning about the disease through the internet. | 32.3 (10) | 45.2 (14) | 9.7 (3) | 12.9 (4) | 0.013 1 |
| (49) There are days when I wake up very well and suddenly, I feel bad. | 71 (22) | 19.4 (6) | 3.2 (1) | 6.5 (2) | <0.001 1 |
| (50) I thought that dry mouth was normal, and not a symptom of this disease. | 61.3 (19) | 16.1 (5) | 3.2 (1) | 19.4 (6) | 0.006 1 |
| (51) As long as I take care of myself, everything will be fine, because it depends on me. | 45.2 (14) | 29 (9) | 22.6 (7) | 3.2 (1) | 0.001 1 |
| (52) My teeth have been badly affected. | 61.3 (19) | 12.9 (4) | 6.5 (2) | 19.4 (6) | 0.008 1 |
| (53) My partner has been understanding about the consequences of the disease in sexual relations. | 54.8 (17) | 12.9 (4) | 6.5 (2) | 25.8 (8) | 0.062 |
| (54) I avoid having sex because of my vaginal dryness. | 35.5 (11) | 29 (9) | 9.7 (3) | 25.8 (8) | 0.286 |
| (55) I wish there were more treatment alternatives or that it was more comprehensive. | 93.5 (29) | 6.5 (2) | 0 (0) | 0 (0) | <0.001 1 |
| (56) When I found out about the diagnosis, I was sad. | 61.3 (19) | 19.4 (6) | 6.5 (2) | 12.9 (4) | 0.001 1 |
| (57) I have continued my normal life; I have not deprived myself due to the illness. | 41.9 (13) | 41.9 (13) | 6.5 (2) | 9.7 (3) | 0.001 1 |
| (58) It bothers me to think that this is not going to end. | 61.3 (19) | 22.6 (7) | 3.2 (1) | 12.9 (4) | 0.001 1 |
| (59) I don’t ask for help, nor do I tell how I feel, so as not to bother. | 38.7 (12) | 25.8 (8) | 12.9 (4) | 22.6 (7) | 0.167 |
| (60) You must face people and say things clearly. | 41.9 (13) | 22.6 (7) | 25.8 (8) | 9.7 (3) | 0.022 1 |
| (61) I feel that doctors don’t have time to attend. | 29 (9) | 22.6 (7) | 19.4 (6) | 29 (9) | 0.943 |
| (62) I was motivated to see the doctor because of my dry eyes. | 32.3 (10) | 19.4 (6) | 3.2 (1) | 45.2 (14) | 0.546 |
| (63) I feel burning and dry eyes. | 74.2 (23) | 16.1 (5) | 6.5 (2) | 3.2 (1) | <0.001 1 |
| (64) They tell you about the symptoms you might have, but it is different when you really live it. | 74.2 (23) | 16.1 (5) | 6.5 (2) | 3.2 (1) | <0.001 1 |
| (65) There is no effective treatment that will assure you that it will work. | 67.7 (21) | 16.1 (5) | 9.7 (3) | 6.5 (2) | <0.001 1 |
| (66) When I was diagnosed, I didn’t give it more importance. | 19.4 (6) | 16.1 (5) | 9.7 (3) | 54.8 (17) | 0.029 1 |
| (67) It hurts me to have sex. | 35.5 (11) | 19.4 (6) | 22.6 (7) | 22.6 (7) | 0.401 |
| (68) What motivated me to see the doctor was my pain in the extremities and joints. | 45.2 (14) | 6.5 (2) | 9.7 (3) | 38.7 (12) | 0.719 |
| (69) I have to do what the doctors say and take care of myself. | 48.4 (15) | 38.7 (12) | 9.7 (3) | 3.2 (1) | <0.001 1 |
| (70) Illness happens to you because it is your turn. | 35.5 (11) | 19.4 (6) | 16.1 (5) | 29 (9) | 0.618 |
1 Wilcoxon Signed Rank Test respect 2.5 (p ≤ 0.05).