Toward a model of social course in chronic illness: the example of Chronic Fatigue Syndrome (CFS)

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.

Ware NC

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