Reactions to invisible disability: the experiences of young women survivors of hemorrhagic stroke

Abstract

Purpose: To discuss how young, female and invisibly disabled, long-term survivors of hemorrhagic stroke experience the reactions of others as they negotiate the social environment.

Method: Open-ended and in-depth interviews were conducted with 22 women to learn about their post-stroke experiences, and the interviews were analyzed for common issues and themes.

Results: Participants expressed concerns about the reactions of others in the context of discussing popular understandings about who is affected by stroke, and the significance of having invisible disabilities. Participants' experiences were mediated by the cultural belief that stroke is a disease of old age, and by the belief that disabilities worth taking seriously are readily visible. The existence of these beliefs about stroke and disability made it difficult for participants to deal with the reactions of others.

Conclusions: Participants must negotiate their everyday lives within a social context that they are ill-prepared to deal with. Rehabilitation practices need to take this into account and counsel stroke survivors about what to expect and what they need to do for a good QOL in the community.