Biographical disruption, abruption and repair in the context of Motor Neurone Disease

Authors


Address for correspondence: Louise Locock, DIPEx Health Experiences Research Group, Department of Primary Health Care, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF
e-mail: louise.locock@dphpc.ox.ac.uk

Abstract

Concepts of biographical disruption and repair have been widely applied to chronic illness, but not terminal illness. This paper examines the relevance of these concepts to motor neurone disease (MND), a progressive neurological condition characterised by loss of mobility, speech and ability to breathe or swallow. Survival is usually between two and five years, and some die within a few months. The condition thus lies at the boundary between chronic and terminal illness. Narrative interviews were conducted with 35 people living with MND and 11 family carers; analysis explored how people constructed their accounts as well as what they said. As well as accounts of biographical disruption, we identified a distinctive sense that the diagnosis is a ‘death sentence’ and life is already over, which we term ‘biographical abruption’. We also found instances of biographical repair, as participants sought to make sense of their remaining life, restore normality and control, and find new meaning and identity.

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