Stories stirring the quest of the good: narratives of women living with chronic rheumatic conditions

Study participantsVivian, woman, 31 years-oldMay, woman, 36 years-oldLily, woman, 53 years-oldEsther, woman, 79 years-oldTime of partici-pation in the studyFour months18 monthsNine monthsSix monthsMedical diag-noses, duration and severity MedicationRheumatoid arthritis since childhood. Needs some medication daily.Systemic Lupus Erythematosus (SLE) since youth. Dependent on heavy medication daily. Needs frequent follow-ups by medical experts.Sjögren's Syndrome since youth. Dependent on heavy medication daily. Needs frequent follow-ups by medical experts.Fibromyalgia since middle age. Dependent on light medication daily and following a daily exercise programme at home.Everyday symptoms and general functionSome pain and fatigue regularly. No visible bodily dysfunction.Severe pain and fatigue. Limitations of bodily movement, especially in shoulder and hip joints. Walks with a visible ‘stiffness’.Severe pain, fatigue and eye problems regularly. Limitations of bodily movements, all joints. Deviations in hands. Walks with a visible ‘stiffness’.Some pain and fatigue regularly. No visible bodily dysfunction.Everyday activities and living conditionsStudent in education lives in a student apartment, together with her daughter, five years old. Struggles to do housework like cleaning and vacuuming. Student loan and disability support.Farmhouse, suburban village. Married, mother of three children, eight, 11 and 17. Disability pension. Takes care of the children, does some housework. Educated in a health profession.Family house, city suburb. Married, two grown children, grandchildren. Does some housework. Chair of the user organization in her district. Disability pension. Educated as a secretary in banking.Apartment, city suburb. Widow, three grown children and grandchildren. Participates in retirement groups connected to her church, former workplace and union. Retirement pension. Educated in the banking sector.Meaningful occupationsSingle mother. Student at the university, graduating. Loves working part-time as a teacher. Spends time with friends and family. Looking for a new boyfriend.Loves to do handicrafts with her children, and some knitting and gardening. Engaged in user organizations for people with CRC, locally and nationally; cheers a local support group of younger couples.Quilter, together with grown daughter. Joint engagement with husband in arts, mainly paintings. Activist in user participation, city and hospital planning. Participates in PT-led exercise groups.Writes a diary, reflects and remembers her life story. Cleans, cooks and keeps the apartment in order. Takes care of heirlooms in the home. Takes long walks. Enjoys family get-togethers.