Toward a model of social course in chronic illness: The example of chronic fatigue syndrome

Retrospective, narrative accounts of illness experience in chronic fatigue syndrome provide the empirical basis for a preliminary conceptual model of social course in chronic illness. Qualities of distress interact with culturally specific expectations for social life and personal conduct to trigger microsocial processes of marginalization: role constriction, delegitimation, impoverishment, and social isolation. Marginalizing processes are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers' interpersonal worlds expands and contracts with the changing predominance of marginalizing and resisting influences over time. Social course thus consists of successive, bi-directional movements along a 'continuum of marginality' by persons living lives with chronic illness.