Gendered career of lupus in El Salvador The male cases

Resumen

Despite increasing prevalence, lupus in the Salvadoran context continues to be rendered invisible—occurring in the show of other more prominent autoimmune diseases such as cancer and HIV/AIDS. In El Salvador, there are two patient advocacy foundations dedicated to lupus, and it is not uncommon to hear members complain that lupus is considered "the cancer of the poor”
and a “woman’s disease.” Drawing on and substantially revising Goffman’s concept of "moral career,” I argue
that the gendered trajectory of the lupus patient in El Salvador, characterized primarily by diagnostic and prognostic ambiguity, is particularly useful for understanding the labor involved in the individual management of lupus, which in turn has the potential to guide the bureaucratic and biomedical diagnosis and provision of care in both institutional settings and domestic environments or la casa, understood not only as physical space, but also as a place where networks of care operate and challenge biomedical imperatives. I examine the feminized trajectory of the disease as something that impacts the experience of the male lupus patient, who in the case of El Salvador is associated with a high mortality rate that comes from a late diagnosis. Attending to lupus in terms of structures and norms that impact the experience of patients with lupus in their daily life, I examine practices of self-medication, self-diagnosis and self-care that foment disruptive and tense relationships between those diagnosed with lupus and those who provide medical care.