杉林, 稔

Sugibayashi, Minoru

The purpose of this study is to describe the experience of patients suffering from chronic illness. We conducted an unstructured interview with a mother of three children who works as a nurse. She also suffers from rheumatoid arthritis. “I think I have changed because of this illness. My co-workers thought I was a severe person, but I could be kind to them. My eldest son who was once naughty became kind to people after my diagnosis. I think it was good for me to have rheumatism,” she said. Within her experience, we found processes, circles, and cycles. First, she was afraid of the appearance of joint deformities. The deformation of her joints was a mechanical process that progresses in a certain direction and is irreversible. Eventually, she would be unable to work due to the progression. Additionally, she did not isolate herself as a rheumatic patient but secured a circle that connected her with other patients through shared pain. Another circle was formed with her children. Furthermore, she was greatly “changed” by becoming sick. She practiced a strategy to continue working despite her condition, and it had a cyclical structure similar to PDCA (plan-do-check-act) cycle. With each cycle, a change occurs across the domain of experience and practice, and a new cycle operates on the changed foundation. In addition, a Japanese word of resignation—“Shaanai,”—was repeatedly uttered, and the narrative had a musical and festive quality. Generally, words are sometimes chanted or congratulatory in nature. “Shaanai” means, “to give up”; nevertheless, this word can give courage to people with chronic illness.

杉林, 稔