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Patient school as a way of creating meaning in a contested illness: The case of CFS
Linköping University, The Tema Institute.
Linköping University, Faculty of Arts and Sciences. Linköping University, The Tema Institute.ORCID iD: 0000-0002-3033-9879
2003 (English)In: Health, ISSN 1363-4593, Vol. 7, no 2, 227-249 p.Article in journal (Refereed) Published
Abstract [en]

Creating meaning in a situation of contested illness like Chronic Fatigue Syndrome (CFS) is an interactive process. As an example of how meaning is created, a CFS patient school organized by a hospital clinic in Sweden is discussed. This school can be seen as both a school and a medically oriented activity. The presence of different frameworks provides an opportunity to use different perspectives to understand CFS. It makes it possible for the participating men and women to regard the illness both from the outside as a social object, from the inside through personal experiences and to put the diagnosis and suffering in a larger 'sickness' perspective. Consequently, a number of different interpretations are brought up and used to create meaning in a situation of illness. The patients/students are thus learning discursively to manage the illness at the same time as they examine different ways to interpret their experiences through this discursive activity.

Place, publisher, year, edition, pages
2003. Vol. 7, no 2, 227-249 p.
National Category
Social Sciences Interdisciplinary
URN: urn:nbn:se:liu:diva-22863DOI: 10.1177/1363459303007002876Local ID: 2204OAI: diva2:243176
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2013-09-04
In thesis
1. Making sense of contested illness: Talk and narratives about chronic fatigue.
Open this publication in new window or tab >>Making sense of contested illness: Talk and narratives about chronic fatigue.
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The primary aim of this thesis is to study how people suffering from chronic fatigue (usually Chronic Fatigue Syndrome, CFS) make sense of their medically unexplained and invisible illness. Due to the vagueness and indefinable character of this illness, it becomes disputed and doubted in many contexts. Thus, I call it a contested illness. Drawing on data from a patient school as well as from recurring interviews with former participants of this school, the meaning-making processes are examined from a communicative and interactive perspective using a primarily narrative approach.

The analysis shows two principle ways of making sense of a contested illness like chronic fatigue, in narrative reconstructions and as interactional processes. Aspects of the narrative reconstructions that can be distinguished as particularly essential to this sense-making are morality and time. Both aspects become closely linked to issues aboutidentity in chronic illness since they concern biography and the personal story of life. In interview narratives, people described the changes in the moral frameworks they use in order to orientate themselves in their quest for what it is to lead a good life. By temporalising their illness, people seemed to deal with issues like responsibility, freedom of liability, blame and guilt, probably prompted by the contestedness of this illness.

Through what is described as the discursive management and the sharing of experience, making sense of chronic fatigue in the patient school turned out to be primarily an interactional process. In interaction with the professionals in the school, the ill persons examined their experiences of suffering in relation to the professionals' views of the illness in a way that seemed to lead to a greater ability to manage illness discursively. Sharing experience of illness by telling each other one's personal story, and by co-narrating the story of suffering from chronic fatigue, meant that a joint image of the illness was created and that personal experiences were transformed into shared collectivised experiences. By this process, also the individual suffering was confirmed.

Place, publisher, year, edition, pages
Linköping: Tema Kommunikation, 2003. 122 p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 280
chronic illness, CFS, illness narratives, illness experience, narrative analysis, sense-making, interaction, identity, morality, temporalization, co-narration, storytelling, discursive management, kroniskt trötthetssyndrom, patienter
National Category
Social Sciences Interdisciplinary
urn:nbn:se:liu:diva-24037 (URN)3593 (Local ID)91-7373-745-3 (ISBN)3593 (Archive number)3593 (OAI)
Public defence
2003-10-31, Sal Key 1, Hus Key, Universitetsområdet Valla, Linköping, 13:15 (Swedish)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2014-09-01Bibliographically approved

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Bülow, PiaHydén, Lars-Christer
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The Tema InstituteFaculty of Arts and Sciences
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