Suffering in a productive world: Chronic illness, visibility, and the space beyond agency

ABSTRACT Is coping with illness really a matter of agency? Drawing on ethnographic research among people with rheumatological and neurological chronic diseases in the United States, I argue that patients’ coping strategies were informed by a cultural expectation of productivity that I call the “John Wayne Model,” indexing disease as something to be worked through and controlled. People able to adopt a John Wayne–like approach experienced social approval. Yet some people found this cultural model impossible to utilize and experienced their lack of agency in the face of illness as increasing their suffering, which was made all the worse if their sickness was invisible to others. Unable to follow the culturally legitimated John Wayne model, people fell into what I call the “Cultured Response”—the realm beyond the agency embedded in cultural models, in which people do not resist but embrace as ideal the cultural expectations they cannot meet and that oppress their sense of value in the world. [ suffering, cultural models, agency, chronic illness, United States, cultural anthropology, medical anthropology ]