Living with Lupus

Women and Chronic Illness in Ecuador

Once associated only with the wealthy and privileged in Latin America, lifelong illnesses are now emerging among a wider cross section of the population as an unfortunate consequence of growing urbanization and increased life expectancy. One of these diseases is the chronic autoimmune disorder lupus erythematosus. Difficult to diagnose and harder still to effectively manage, lupus challenges the very foundations of women’s lives, their real and imagined futures, and their carefully constructed gendered identities. While the illness is validated by medical science, it is poorly understood by women, their families, and their communities, which creates multiple tensions as women attempt to make sense of an unpredictable, expensive, and culturally suspect medically managed illness.Living with Lupus vividly chronicles the struggles of Ecuadorian women as they come to terms with the experience of debilitating chronic illness. Drawing on years of ethnographic research, Ann Miles sensitively portrays the experiences and stories of Ecuadorian women who suffer with the intractable and stigmatizing disease. She uses in-depth case histories, rich in ethnographic detail, to explore not only how chronic illness can tear at the seams of women’s precarious lives, but also how meanings are reconfigured when a biomedical illness category moves across a cultural landscape. One of the few books that deals with the meanings and experiences of chronic illness in the developing world, Living with Lupus contributes to our understanding of a significant global health transition.