The subjective experience of chronic disease: some implications for the management of ulcerative colitis

Abstract

The paper first describes the subjective experience of chronic ulcerative colitis. Using autobiographical data some of the intra- and inter-personal strategies for coping with the disease are outlined. Then, selective socio-medical issues arising from the data--the relationships between physical and social events, denial and normalisation of illness, doctor-patient communications, and lay knowledge and perceptions--are elaborated. Finally suggestions for the social management of patients with ulcerative colitis are drawn out. It is argued that the importance of the subjective experience, as well as the physical process of the disease must be confronted by the physician, that the counseling of colitics should aim, where possible, to encourage normal social development, that the possibilities of the life-threatening nature of the disease and the type of curative surgery should be addressed at an early stage by the patient and their family and that patients should be allowed to do "grief-work" to help them to come to terms with the disease and its likely outcomes.