Healthwork Undertaken By Women Living with Autoimmune Diseases: Emergent Institutional Mapping

Institutional Ethnography (IE), a sociological method of inquiry, generates empirical accounts of how invisible social relations and institutional practices, called “ruling relations” in IE, govern, organize and coordinate people’s knowledge and “work practices”. Through examining work practices, a broad term referring to the collection of everyday activities in which people engage that require time, effort and skill, their experiences of the power exerted by ruling relations can be explicated. Similar to work, “healthwork” is an advancement within IE which describes the often invisible collection of tasks that must be performed to take care of one’s health. Autoimmune diseases (AD) including Rheumatoid Arthritis, Crohn’s disease and Ulcerative Colitis are debilitating for millions of Canadians. These ADs are chronic illnesses which involve the immune system mistakenly attacking itself. They have unknown causes, are incurable, are often invisible, are commonly misunderstood by physicians, and their incidence is rising, especially among women. While extant social epidemiological research has documented the challenges experienced by women with ADs, this field has not yet examined how the healthwork of women with AD’s is shaped by the complex institutional operations of healthcare, pharmaceutical and social care systems, housing, and employment services. Taking the standpoint of women with ADs, this doctoral research uses IE to describe the ruling relations that govern the healthwork practices of women with ADs, and explains how ruling relations have their effect. This presentation will draw on interview data and texts from both the women with ADs and those working within institutions to present an emerging institutional map, highlighting text-work sequences, that illuminate how the women’s healthwork is connected to and coordinated by the activities of people within institutions, and how their work is textually mediated and hooked into ruling relations.