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Making sense of contested illness: Talk and narratives about chronic fatigue.
Linköping University, The Tema Institute, Department of Communications Studies. Linköping University, Faculty of Arts and Sciences.
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.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 280
Keyword [en]
chronic illness, CFS, illness narratives, illness experience, narrative analysis, sense-making, interaction, identity, morality, temporalization, co-narration, storytelling, discursive management
Keyword [sv]
kroniskt trötthetssyndrom, patienter
National Category
Social Sciences Interdisciplinary
Identifiers
URN: urn:nbn:se:liu:diva-24037Local ID: 3593ISBN: 91-7373-745-3 (print)OAI: oai:DiVA.org:liu-24037DiVA: diva2:244353
Public defence
2003-10-31, Sal Key 1, Hus Key, Universitetsområdet Valla, Linköping, 13:15 (Swedish)
Supervisors
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2014-09-01Bibliographically approved
List of papers
1. Chronicity and moral quests: Sense-making and self-making in narratives about chronic fatigue
Open this publication in new window or tab >>Chronicity and moral quests: Sense-making and self-making in narratives about chronic fatigue
(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
illness narratives, narrative analysis, morality, identity, contested illness
National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-78968 (URN)
Available from: 2012-06-26 Created: 2012-06-26 Last updated: 2012-06-26Bibliographically approved
2. In dialogue with time: Identity and illness in narratives about chronic fatigue
Open this publication in new window or tab >>In dialogue with time: Identity and illness in narratives about chronic fatigue
2003 (English)In: Narrative Inquiry, ISSN 1387-6740, E-ISSN 1569-9935, Vol. 13, no 1, 71-97 p.Article in journal (Refereed) Published
Abstract [en]

When we are stricken with an illness or some other affliction, the temporal frameworks that we take for granted in our everyday lives are overturned. Thus suffering and illnesses raise questions associated with temporality: were the past events necessary and unavoidable, could anything else have happened, and what will happen next? In this article we will discuss two intertwined problems that have to do with the organization of time in narratives about illness: the interviewee's attempt to create an interview narrative and the researcher's need to create a temporal order and coherence in the interview material properly founded in research. With a foothold in the literary scholars Morson's and Bernstein's theories about shadows of time we base our argument on an analysis of narratives given in interviews by people affected by Chronic Fatigue Syndrome (CFS). The analysis shows various ways time can be used as a discursive tool to temporalize illness and suffering including temporalities that frequently go outside linear time perceptions by the use of “sideshadowings“. These various ways of temporalizing illness influence, for instance, factors like issues of responsibility and freedom of action. Findings like these indicate the importance of including the interviewees' own temporalizations in the analysis of illness narratives in social science.

Keyword
Illness Narratives, Interviews, Narrative Analysis, Responsibility, Temporalization
National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-22862 (URN)10.1075/ni.13.1.03bul (DOI)2203 (Local ID)2203 (Archive number)2203 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
3. Patient school as a way of creating meaning in a contested illness: The case of CFS
Open this publication in new window or tab >>Patient school as a way of creating meaning in a contested illness: The case of CFS
2003 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, 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.

National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-22863 (URN)10.1177/1363459303007002876 (DOI)2204 (Local ID)2204 (Archive number)2204 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13
4. Sharing Experiences of Contested Illness by Storytelling
Open this publication in new window or tab >>Sharing Experiences of Contested Illness by Storytelling
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.

Keyword
chronic illness, co-narration, identity, illness experience, narrative analysis, storytelling
National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:liu:diva-24102 (URN)10.1177/0957926504038943 (DOI)3675 (Local ID)3675 (Archive number)3675 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved

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