Managing a Medically and Socially Complex Life: Women Living With Lupus

Abstract

Systemic lupus erythematosus is a systemic autoimmune illness that affects women more frequently than men and disproportionately affects women of color. Because so little is known about living with lupus, the author undertook a qualitative study to identify salient aspects of affected women's daily experiences. Seven women with lupus participated in three interviews, each separated by 1 month, and they also maintained a daily symptom journal. In addition, 23 women recruited from the Internet submitted narrative accounts of their experiences of living with lupus. Analysis of the findings suggests that living with lupus involves managing a medically and socially complex life. The complexity of life with lupus is dimensionalized by the overlapping themes, identified as a life of uncertainty, a shifting sense of identity, and managing the financial burden of illness.