Being differently the same: The mediation of identity tensions in the sharing of illness experiences

F Mazanderani, L Locock, J Powell

Research output: Contribution to journalArticlepeer-review

42 Citations (Scopus)


The sharing of experiences between patients has become increasingly privileged as a source of knowledge and support in contemporary healthcare. Despite this, relatively little is known about the processes whereby people's experiences become, or fail to become, valued as sources of health-related knowledge in different contexts. Through a secondary analysis of 87 interviews conducted between 2006 and 2008 in the UK with people affected by motor neurone disease (46 interviews) and Parkinson's disease (41 interviews), we explore the identity work involved in turning other people's experiences into 'experiential knowledge' that can be shared between patients. Of particular interest is how the turning of others' experiences into knowledge is presupposed by negotiating a particular type of identity tension - what, drawing on the work of Paul Ricoeur (2003) on metaphor, we refer to as 'being differently the same'. We examine the way in which people living with motor neurone disease and Parkinson's disease spoke of managing this tension as part of the process of accessing and valuing other patients' experiences, both epistemologically and emotionally. Instead of treating others' experiences as a pre-given source of knowledge, we emphasise how experience comes to be embodied and articulated through different media - bodies, speech, text, and images. Moreover, we suggest that paying closer attention to these media provides opportunities for enhancing our understanding of how people with different chronic and/or terminal illnesses use or do not use different forms of peer support - and in particular online ones - as a source of health-related experiential knowledge. Some of the implications of this are discussed in the specific context of people diagnosed with incurable neurodegenerative conditions characterised by visible physical deterioration and associated emotional distress. © 2011 Elsevier Ltd.
Original languageEnglish
Pages (from-to)546-553
Number of pages8
JournalSocial Science & Medicine
Early online date8 Dec 2011
Publication statusPublished - 1 Feb 2012

Bibliographical note

The authors would like to thank all the interview participants as well as Rachel Miller and Carol Dumelow, who conducted many of the interviews used in this paper. The original studies were funded by the NHS Service Delivery and Organisation Research and Development Programme and the Motor Neurone Disease Association. An earlier version of this paper was presented at a workshop titled ‘Online Patient Experience (PEx) and its role in e-health’ held at the British Computing Society Conference on Human-Computer Interaction in July 2011 at Northumbria University, and the authors are grateful for the useful comments they received from those attending the workshop. The anonymous reviewers provided thoughtful feedback on a previous version of this paper.

The iPEx programme presents independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147). The views expressed in this paper are those of the authors, representing iPEx, and not necessarily those of the NHS, the NIHR or the Department of Health. The iPEx study group is composed of: University of Oxford (Sue Ziebland, Louise Locock, Andrew Farmer, Crispin Jenkinson, Rafael Perera, Ruth Sanders, Angela Martin, Laura Griffith, Susan Kirkpatrick, Nicolas Hughes and Laura Kelly); University of Warwick (John Powell, Fadhila Mazanderani); University of Northumbria (Pamela Briggs, Elizabeth Sillence, Phoenix Mo, Claire Hardy); University of Sheffield (Peter Harris); University of Glasgow (Sally Wyke); Department of Health (Robert Gann); Oxfordshire Primary Care Trust (Sula Wiltshire); User advisor (Margaret Booth).


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