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Chronicity and moral quests: Sense-making and self-making in narratives about chronic fatigue
Linköping University, The Tema Institute. Linköping University, Faculty of Arts and Sciences.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

This article discusses how moral questions raised by an illness like Chronic Fatigue Syndrome (CFS) become part of people's illness narratives. Drawing on the writings of the philosopher Charles Taylor (1989), about moral quests and identity, two individual sufferers' illness narratives are analysed concergning how they try to make sense of life with respect to morality and how to maintain oneself as a moral person in and through narratives. The analysis shows that the narrative reconstruction and the anchoring of illness in the personal life story seem to be of significance for orienting oneself in a moral space. This orientation, or sometimes re-orientation, also included the question of where they were heading, that is the future. One exampe is the shift in moral frameworks about what it means to lead a good life. The analysis also shows that people through their narratives resist threats against their sense of self by striving to maintain their views of themselves as moral persons. This was for instance done by presenting themselves as trustworthy persons and as persons with dignity.

Keyword [en]
illness narratives, narrative analysis, morality, identity, contested illness
National Category
Social Sciences Interdisciplinary
URN: urn:nbn:se:liu:diva-78968OAI: diva2:537298
Available from: 2012-06-26 Created: 2012-06-26 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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The Tema InstituteFaculty of Arts and Sciences
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