Demographic and clinical characteristics
A total of 24 patients were invited and two of them refused to take part in the study. The sociodemographic and clinical characteristics of the 22 participants are presented in Table 1. There were 14 men (63.6%) and 8 women (36.4%), with a mean age of 42.6 ± 12.9 years (range 18–70 years), and most of them (68.2%) were married. In the level of education, one half (50.0%) had completed high school or technical secondary school. With regards to occupation, 16 participants (72.7%) had jobs. The most frequent clinical type was plaque psoriasis. The mean duration of psoriasis was 12.5±10.5 years (range 1-41 years). The majority of the participants (59.1%) were in the moderate severity range.
Four themes emerged in this study including “Impact on physical activities”, “Impact on psychological feelings”, “Impact on social relationships” and “Impact on work and profession”.
Impact on physical health
All participants said that they had symptoms of itching and discomfort in many parts of the body. Most participants had symptoms of redness, stinging or burning, pain, and scaling (flaky skin). These symptoms were found to adversely affect their vitality (energy, vigor, and absence of fatigue) and sleep and rest (sleeping, sitting, and napping during the day), thereby affecting physical functioning. For example, a participant with psoriasis reported that he suffered from itching, which affected his sleep.
“Even if I’m sleepy at night, I can’t fall asleep because it’s too itchy. Sometimes I wake up in the middle of the night. It’s so uncomfortable and I don’t know how to make it better.” (Man 1, 28 years)
Sometimes when the itching was very severe and participants cannot help scratching, which can lead to skin sweating, bleeding, etc.
“When it itches, I’d scratch until it bleeds. In winter it would crack and hurt a lot.” (Man 1, 28 years)
“(It is) Extremely itchy and always has flakes falling off. In the worst time, the fallen flakes from my legs would add up to 50 grams. A dreadful scene.” (Man 13, 62 years)
The physical symptoms of psoriatic skin lesions can also significantly affect mobility including walking, carrying and climbing stairs.
“The skin would grow so thick and bending down or bending legs would hurt. Moving would hurt too.” (Man 6, 58 years)
“I used to like going hiking on the mountains with friends. And now walking becomes a trouble for me.” (Man 14, 59 years)
Psoriasis symptoms also affected participants’ specific daily activities, including clothing (which must be changed or washed more frequently) and bathing (which must be done more often).
“I have to change clothes and sheets every day because of so many skin flakes.” (Woman 15, 30 years)
“I usually have one shower each day but since I have this disease, I wish I could shower in the morning and in the evening. Shower makes me feel better.” (Woman 8, 31 years)
Symptoms of psoriasis can have a greater impact on farmers in particular. A farmer participant said that because his work was mainly physical, which required a high level of physical function. He needed to stoop frequently and to walk all the time even if he felt ill.
“It hurts when I do farm work but I have to suck it up. A countryman has to work in the field. Lying around and doing nothing is never an option.” (Man 10, 55 years)
Impact on psychological feelings
Many participants reported experiences of overt public rejection, such as being asked to leave the public bath or hairdressers. This made those participants avoid interpersonal situations or public places where rejection may occur, which in turn can reduce their social and occupational opportunities, generate loneliness and disgust of psoriasis, and further damage their QoL.
“Public bath houses put up signs to forbid people with contagious diseases from going in. One time I took off my clothes to go inside. Someone asked me what the disease was. I explained but they seemed reluctant to let me in. I was so embarrassed and have never been to public bath houses ever again.” (Woman 17, 32 years)
“A hairdresser at the hair salon I usually go told me mildly that some customers worried if my disease was contagious. Although she didn’t shut me out, I didn’t want to put them in a difficult situation. So later I learnt to cut my own hair at home.” (Man 22, 31 years)
Some participants expressed that they received comments such as scary and disgusted, or sometimes were stared at by other people. These comments and behaviors made them feel sad and negative.
“When I lived with my coworkers, the first reaction when they saw me like this was ‘scary’. They didn’t know what disease it was or whether it was contagious or not. The look itself was terrifying. So they tried to avoid me.” (Man 5, 42 years)
“I used to be confident no matter with my skin or other factors. Suddenly I got this disease. Sometimes when I’m with friends, they’d say “your skin was so good and suddenly you get this rash all over. I would be disgusted if I were you.” And I’d suddenly feel hopeless for this world and this society.” (Woman 8, 31 years)
“I always sit in the last row on a bus because people would give you a weird look. They would stare especially in summer.” (Man 1, 28 years)
Participants with psoriasis was with an increased risk of mental illness, especially depression and anxiety. The chronic and recurring nature of this disease often brought them a feeling of hopelessness in terms of cure for the condition. Participants reported that they were constantly concerned with the interference with future plans due to an unexpected outbreak of symptoms. This can possibly intensify due to their lack of control over the disease.
“I don’t think the treatment is working well. I don’t hold up my hopes anymore.” (Man 18, 51 years)
“Sometimes I do feel pessimistic. I can’t see hopes. No matter how much it costs, it will be worth it if the disease is under control and I don’t suffer this much. But after so many years and so many doctors, it’s still not cured.”(Man 11, 46 years)
“The disease is frustrating. I would rather have cancer. If I had cancer, people would feel sorry for me. But no one feels sorry for me with this disease. I even feel disgusted looking at myself. It looks dirty.” (Man 6, 58 years)
Participants with psoriasis also expressed their anxiety that their relatives would be infected by them, and they often worried about their children’s health.
“The only thing that scares me is heredity of this disease. We were going to have another child, but now we’re afraid to pass this on to our kid. Sometimes my daughter says “mom, I’ve got something here on my leg. It itches.” And I would be so anxious and take her to the hospital at once. I’d only be relieved if the doctor says ok.” (Woman 21, 35 years)
Impact on social relationships
A few participants stopped going to public place and meeting friends because of their disease, and most of the participants worried about the thoughts and reactions of others towards their disease. They reported that they felt humiliated when they exposed their bodies in public places, such as eating with others, hot springs, business trips and other social activities, without providing appropriate privacy.
“I don’t go to friends’ gatherings any more. Sometimes it shows even on my face and I feel embarrassed to go out. If I go have lunch with my friends, and the skin flakes keep falling off, I couldn’t be at ease. Even if there were no flakes, there would be white patches on the skin. I fear it would disgust others.” (Woman 17, 32 years)
“I wouldn’t dare to share a room with others on business trips. I’m afraid if colleagues see me, they would despise me.” (Man 6, 58 years)
“One time a friend invited me to a hot spring bath, and I declined. I feared people might find me with the disease.” (Man 11, 46 years)
“I rarely go to public bath houses in my work place back in the day. I felt I was a leopard and would scare people away.” (Man 20, 70 years)
Many of the participants often felt the need to hide their disease which severely affected their self-confidence.
“I’m reluctant to show my arms in my uniform at work. Always wearing long-sleeves to avoid being seen. If people ask, I feel embarrassed and upset. Sometimes it’s in the middle of an interesting conversation, and the moment would be gone.” (Woman 16, 46 years)
Psoriasis was also found to have a negative impact on the desire for physical intimacy, as thirty percent of participants reported that psoriasis interfered with their sexual relations.
“If a couple are about to have sex, it would kill the mood once the clothes are off.” (Man 3, 37 years)
“I have my own bed with sheets and blankets of my own. I isolate myself from my family. There’s no other way.” (Man 5, 42 years)
“I don’t sleep on the same bed with my wife. I sleep in another room. I loathe myself.” (Man 18, 51 years)
“(I’m) Not confident. For example, when looking for a marriage partner, I feel reluctant to tell the truth but it’s worse to hide it as the disease is genetic. I don’t want to spoil others’ chances.” (Man 22, 31 years)
Participants also reported that their disease negatively affects courtship activities.
“I know a girl patient of 25 years old. She doesn’t even want to have a relationship, fearing being despised. She always says “who would want me in this disease?” She’s worried if she gets married and the disease relapses, she’d end up in a divorce.” (Woman 19, 45 years)
Negative impact on work and profession
Psoriasis not only brought direct financial burden to participants, but also caused serious occupational barriers. Some participants reported that psoriasis reduced their ability to work and negatively affected their income. Participants generally reported that the disease affected productivity, then chance of employability, the choice of job and occupation, as well as the resulting income. There seemed to be an opposite relationship between psoriasis severity, works and income.
“It affects work efficiency. Let’s say if I’m working on something and touched my hair accidentally. The dandruff would fall a lot and I would feel dirty and itchy and couldn’t resist scratching. If it bleeds, my concentration on work would be directly lowered.” (Man 2, 30 years)
Some participants said that they were even not be able to work or go to school normally.
“I couldn’t work. When it’s getting serious, I have to take some rest.” (Man5, 42 years)
“I think the disease is a heavy blow on people’s enthusiasm. The Spring Festival is an important time for businesses. But when the disease is back, I have to stop everything.” (Woman 12, 50 years)
“I don’t want to go to school. Not in the mood.” (Man 7, 16 years)