Life course changes provoked by chronic disease: A study on everyday life for patients with systemic lupus erythematosus

OBJECTIVE: This study examined patients with systemic lupus erythematosus (SLE) as a means to explore the impacts of chronic disease on life courses. METHODS: A semi-structured in-depth interviews were conducted with nine patients in China in 2017; participants were included based on their having or having had facial butterfly erythema. RESULTS: The study focused on both the disease’s impact on the patients’ health and on their daily lives. Four core themes emerged: visible changes in the patient’s bodies, social dilemmas, “the encouragement of disease”, and a new perspective on the relationship between disease and health. One important finding was that the occurrence of a chronic disease did not have only negative repercussions; some patients felt that there were advantages to being sick. Chronic disease resulted in a reworking of daily life. The patients developed a self-referential model of healing. CONCLUSION: The distinct interpretations of the same disease offered by different patients served to yield a more complete understanding of the disease. People with SLE adjust their thinking about the disease based on personal feelings as well as experiences and pursue a dialogue on their illness based on the disease pattern unique to them. The meaning that disease had for the patients was not limited to negative connotations.