Seeing the glass half full: living with Sjogren's Syndrome

The purpose of this qualitative research was to explore the lived experiences of women with Sjogren's Syndrome (SS), a chronic autoimmune syndrome in which invading lymphocytes attack moisture-producing glands of the body. This syndrome, affecting 4 million Americans, involves extreme dryness of the eyes and mouth and other systemic complications such as fatigue and muscle and joint pain. Ten women, ranging in age from 27 to 83, with SS were interviewed to understand their coping strategies and attitudes. This study used Strauss' framework to view the quality of life of the chronically ill-specifically, those with SS. Nine questions were asked to elicit information on limitations with daily living, relationships, emotions about lifestyle changes, and comparisons with others living with chronic disease. In addition to SS, 8 of the 10 women also had fibromyalgia, and 4 had other conditions such as lupus and rheumatoid arthritis (secondary Sjogren's). Their responses were categorized into four groups: helping, hindering, hoping, and hurting. This led to the development of the 4H Model of Chronic Autoimmune Disease with subcategories such as: supporting, joining, comparing, coping, health promoting, fearing, becoming a chronic sufferer, feeling, wishing, appearing, impeding, restricting, isolating, suffering, doctoring, and diagnosing. J Prof Nurs 17:194-202, 2001.