In the Closet with Illness: Epilepsy, Stigma Potential and Information Control

Analysis of how people manage information to control the stigma potential of epilepsy offers an “insider's” perception of stigma, and demonstrates how concealment strategies can be learned from coaches, that strategies for concealment vary, and that the closet of epilepsy has a revolving door.

Abstract

In this paper we extend and modity the metaphor of being in or out of the closet to analyze how people manage information to control the stigma potential of epilepsy. Based on 80 depth interviews, our analysis offers an "insider's" perception of stigma. We demonstrate how concealment strategies can be learned from coaches, that strategies for concealment vary, and that rather than simply indicating a situation one is in or out of, the closet of epilepsy has a revolving door. We also find, paradoxically, that both "instrumental telling" and concealing can be means to the same ends. We conclude by discussing how being in the closet with illness doubly isolates individuals from one another.