title: No one listens to me, nobody believes me: self management and the experience of living with encephalitis.
abstract: Over the past twenty years, there has been considerable interest in individuals' experience of chronic illness. In addition to the more established concerns of medical sociology, recent policy reflects an interest in how individuals manage their condition. Using material from qualitative interviews with 23 individuals carried out in the United Kingdom, this paper examines a person's experience following encephalitis, as a way of exploring the potential value of current policy initiatives associated with self-management. Our findings suggest that individuals' illness experiences become embedded in conditional acceptance derived from and sustained through their social relationships. This raises a fundamental policy tension: is the purpose of current self-management strategies to help individuals cope better with illness or with the context in which their illness experience is realised? We conclude that policy needs to question how it 'imagines' long-standing conditions, without recourse to generalised notions of coping and adjustment. This, in turn, means adapting a less instrumental and more contextualised approach to self-management.
authors.affiliation: Department of Health Sciences, Alcuin College, University of York, Seebohm Rowntree Building, York YO10 5DD, United Kingdom. Electronic address: ka512@york.ac.uk.
authors.forename: Karl
authors.initials: K
authors.lastname: Atkin
authors.affiliation: Department of Health Sciences, Alcuin College, University of York, Seebohm Rowntree Building, York YO10 5DD, United Kingdom.
authors.forename: Sally
authors.initials: S
authors.lastname: Stapley
authors.affiliation: The Encephalitis Society, 7B Saville Street, Malton, North Yorkshire YO17 7LL, United Kingdom.
authors.forename: Ava
authors.initials: A
authors.lastname: Easton
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D002908:Chronic Disease; D017281:Cost of Illness; D003951:Diagnostic Errors; D004660:Encephalitis / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D010817:Physician-Patient Relations; D036301:Qualitative Research; D012648:Self Care; D012938:Social Perception