Boundary Work as Emotion Work: Constructing Wellness Through Narratives of Invisible Chronic Illness

• In Event: Health, Well-being, and Emotions

Abstract

This paper asks: How do people living with invisible chronic illnesses use emotion to manage boundaries between health and illness in their daily life? Drawing on 20 in-depth interviews from an ongoing research project with people experiencing invisible chronic illnesses, I argue that boundary work presents as a form of emotion work, in (1) the managing one’s own emotional expectations for the future and self-esteem as well as (2) the managing of emotions of others through the use of physical symbols, intentional language and strategic disclosure of disability. Individuals with nonapparent and fluctuating disabilities, such as chronic illnesses are often seen as less legitimate floating somewhere between able and disabled, not fully belonging to either neatly defined box. In other words, invisible chronic illness involves a hyperawareness of the cultural categories “health” and “sickness” as well as their symbolic meanings. This project departs from previous scholarship on boundary work because much of the literature in this area focuses on the boundaries between groups, occupations/disciplines and organizations- there is less attention paid to the mental and behavioral activities that create, maintain and modify cultural categories, and even fewer that examine narrative as a mechanism for boundary work, or focus on emotion as a driver in this process. Highlighting emotion allows for a deeper understanding of the complex ways broader social conditions influence why and how people engage in boundary work.

Author

• Sara Delaney Rocks, University of South Florida