The social construction of contested illness legitimacy: a grounded theory analysis

This study examines the social influences that shape how individuals come to believe they have a contested illness and the explanations of illness legitimacy that result. Chronic fatigue syndrome, multiple chemical sensitivities, and Gulf War syndrome have all been identified as contested illnesses because their etiology, diagnosis, and prevalence are controversial. Narratives from in-depth interviews with 22 individuals who identified themselves as having these illnesses were analysed using a grounded theory approach. Findings indicate that claiming medical legitimacy for a contested illness involves a difficult and protracted process in which sufferers develop social representations of the etiology, diagnostic criteria, trajectory, and treatment of their illnesses. Study results shed light on the role of sufferers in the social construction of the medical and cultural legitimacy of emerging illnesses.