Striving for legitimacy : a sociological inquiry into the struggle for diagnosis in virtual health communities

Abstract

This qualitative study sets out to explore the impact of a clinical diagnosis on one‟s illness experience; both in the medical encounter and also in the wider social milieu. In an attempt to understand the benefits brought forth by the receipt of a diagnostic label, this study seeks to gain insight into the lived experience of individuals living with medically unexplained symptoms who are actively in search of a diagnosis. It also investigates how the internet, particularly through virtual health communities, can potentially alter the lived experience of these individuals. A qualitative research design was used to gather data from three online support groups where non-participant observation together with in-depth interviewing were carried out. Findings suggest that society does not readily legitimise one's illness experience in the absence of a known and identifiable disease, and this ultimately results in several repercussions for the undiagnosed individual. This study concludes that although diagnosis is primarily a medical process, it is no less a social process which has the capacity of bringing about social order in the midst of chaos and uncertainty, by way of organising and validating one's illness experience.