Electronic support groups, patient-consumers, and medicalization: the case of contested illness

Abstract

This article illustrates the role electronic support groups play in consumer-driven medicalization. The analysis is based on an observational study of a year in the life of an electronic support group for sufferers of the contested illness fibromyalgia syndrome. The analysis builds on and extends scholarship concerning the growing influence of lay expertise in the context of medical uncertainty by showing how the dominant beliefs and routine practices of this electronic community simultaneously (and paradoxically) challenge the expertise of physicians and encourage the expansion of medicine's jurisdiction. Drawing on their shared embodied expertise, participants confirm the medical character of their problem and its remedy, and they empower each other to search for physicians who will recognize and treat their condition accordingly. Physician compliance is introduced as a useful concept for understanding the relationship between lay expertise, patient-consumer demand, and contemporary (and future) instances of medicalization.