Attitudes toward patient expertise in chronic illness

Although it has become an accepted standard to acknowledge the patient as a full partner in health care decisions, replacing traditional authoritative relationships with those based on an emancipatory model, the experiences of persons living with chronic illness confirm that this paradigm shift is not yet apparent in many health care relationships. In this paper, the authors present a qualitative secondary analysis of combined data sets from their research into chronic illness experience with two quite different chronic diseases — Type I Diabetes (a socially legitimized chronic disease) and Environmental Sensitivities (a disease which is currently treated with considerable scepticism). Comparing the experiences of individuals with diseases that are quite differently socially constructed, it becomes possible to detect common underlying health professional values and attitudes that powerfully influence the experience of living with and negotiating health care for a chronic illness. In the discussion of findings from this study, the authors examine the implications of the spiral of behaviors that fuels mutual alienation in chronic illness care relationships if professionals are unable to value patient expertise.