Control over stories of illness and life: the case of a media participant turned media professional

Abstract

This article discusses the relationship between nonprofessional media participation and the professional handling of participants. It expands on the case of “Karen”, who related her life-threatening illness and patient experience in a broad range of media before transitioning into professional communications work for a health organization that required her to recruit other patient-participants. The article contributes to research on media participation by focusing on the blurred boundaries between professionals and nonprofessionals. It describes how relationships between the two can be characterized by tensions and dilemmas that are closely tied to issues of status and control. Karen’s case is instructive in the particular light it sheds on such matters and on how control over the mediated telling of a life story is exercised.