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

摘要

ObjectiveThis study examined patients with systemic lupus erythematosus (SLE) as a means to explore the impacts of chronic disease on life courses.MethodsA 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.ResultsThe 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.ConclusionThe 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.