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Sharing Experiences of Contested Illness by Storytelling
Linköping University, The Tema Institute, Department of Communications Studies. Linköping University, Faculty of Arts and Sciences.
2004 (English)In: Discourse & Society, ISSN 0957-9265, E-ISSN 1460-3624, Vol. 15, no 1, 33-53 p.Article in journal (Refereed) Published
Abstract [en]

Based on audiotaped conversations from a patient school for adults suffering from chronic fatigue syndrome, this article examines sharing experiences of illness as a mutual activity. The analysis shows that sharing experiences in this context is primarily of the narrative kind. Three main types of narratives were found: self-contained personal stories, orchestrated chained personal stories, and co-narrated collectivized stories. Through sharing three things seem to happen: (1) the participants jointly created experiential knowledge and a mutual image of the illness, (2) the individual sufferers could compare themselves to the jointly constructed image, (3) the active sharing of experience bestows a mutual confirmation of suffering irrespective of whether the individual’s experiences correspond or deviate from the common picture. Two parallel transitions seemed to occur: the transformation of personal experience into shared collectivized experiences and the transition when the individual sufferer perceives his/her private suffering through sharing experiences with co-sufferers.

Place, publisher, year, edition, pages
2004. Vol. 15, no 1, 33-53 p.
Keyword [en]
chronic illness, co-narration, identity, illness experience, narrative analysis, storytelling
National Category
Social Sciences Interdisciplinary
URN: urn:nbn:se:liu:diva-24102DOI: 10.1177/0957926504038943Local ID: 3675OAI: diva2:244419
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2012-06-26Bibliographically approved
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, Pia
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