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No one listens to me, nobody believes me: Self management and the experience of living with encephalitis

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Publication details

JournalSocial Science & Medicine
DatePublished - Jul 2010
Issue number2
Number of pages8
Pages (from-to)386-393
Original languageEnglish


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. (C) 2010 Elsevier Ltd. All rights reserved.

    Research areas

  • UK, Self-care, Chronic illness, Self-management, Coping, Encephalitis, Brain injury, CHRONIC ILLNESS, HEALTH, SOCIOLOGY, EDUCATION, STRATEGY, LIFE

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