Agencies and Experiences of the “Good Participant”: The Long-Term Trajectories of Patients Turned Media Participants

Abstract

As a prominent case of media participants with a high moral status, medical patients have become central across media and platforms, particularly because journalists need them as exemplars. On the basis of in-depth interviews with 18 Norwegian patient-participants, this article investigates the agencies and experiences involved in longer spans of participation across mass and social media. The article shows that although communicating illness enables affirmative and meaningful forms of openness and sharing for patient-participants, over time stresses and conflicts also appear as participants negotiate the terms and limits of their self-disclosure in an effort to exercise agency over their illness stories. In general terms, the article argues for an approach to media participation that takes into account high-status forms of participation, multiple media, and participation trajectories over longer spans of time.