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

ABSTRACT: 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. Highlights What is known?? Systemic lupus erythematosus (SLE) is a complex and typically chronic illness that may cause inflammation activity and damage in any of the organs, often resulting in decreased physical, emotional and social abilities, depression, pain, fatigue, visible or invisible changes in appearance. Patients with SLE may develop body image concerns from multifold reasons, of which only some may be due to externally visible characteristics.? Following a flare of SLE there is often a lingering sense of threat, and the feeling of a setback-in-life persisted long after the disease was medically under control. Patients with SLE are likely to be stigmatized and often treated indifferently. What is new?? The way SLE patients think about the disease is based on their personal feelings and experiences, and they pursue a dialogue on their illness according to respective disease patterns. The meaning that disease had for patients is not limited to negative connotations. SLE patients would confront both the problem of treating the disease as well as the challenge of how to maintain and develop their social relations. This problem could not be solved by medical treatment. Rather, it calls for the efforts of both patients and society.? With the control of the disease, SLE patients could re-examine the relationship between “disease”, “body” and “self”, and finally accept the existence of the disease. Chronic diseases could have diverse sets of meanings in illness narratives, during an experience of illness, negative emotions—such as grief—comprise only one part of the entire process.

SUBMITTER: Huangfu Z 

PROVIDER: S-EPMC7501471 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature