Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis

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Abstract

Chronic illness is disruptive, threatening people's sense of identity and taken for granted assumptions. Transformations in values, expectations and life priorities are likely to be experienced and in order to regain a coherent sense of self, people must interpret their experiences. People with difficult to diagnose illnesses can find themselves living with greater uncertainty and stigma. This paper explores how people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) describe and interpret their illness experience by applying Arthur Frank's narrative typologies to analyse interviews with 17 British people with CFS/ME. The analysis proposes that a trajectory of narrative typologies is experienced, starting with a restitution narrative, moving to a chaos narrative and, for most, back to a restitution narrative and on to a quest narrative. The presentation of narrative types put forward by people living with CFS/ME differ to those presented by people who are HIV positive and have been treated for breast cancer.

Section snippets

Background

When lives have been disrupted by illness efforts to create continuity or to ‘reorient’ oneself, can be viewed as the attempt to reconstruct personal life histories (Williams, 1984). By uncovering a means of interpreting the illness, we become better able to re-establish the relationship between the self, the world and our bodies (Bury, 1982). The narrativised reconstruction is concerned with gaining meaning and import to the illness by placing it within the context of one's own life and

Illness narratives: theory

Narrative theory is increasingly employed to understand the subjective experience of illness (McLeod, 2000) with growing recognition that narratives are the means by which we render our existence as meaningful (Polkinghorne, 1988). Earlier work sought to establish the existence of a narrative approach and theory as offering an alternative to a dominant positivistic paradigm (Sarbin, 1986) arguing that two forms of thought existed, the scientific and the narrative (Bruner, 1990). A general

Previous work using Franks’ illness narratives typologies

Two studies have directly employed Frank's (1995) work (Ezzy, 2000; Thomas-Maclean, 2004), but parallels can be drawn with other studies that link with key themes from the narrative types. Ezzy (2000) interviewed 46 people living with a diagnosis of HIV. In this study, over a third of the sample told only a restitution narrative, the driving theme being seeking recovery from what is currently an incurable condition. They attempted to live a normal life by dealing with the diagnosis and future

Method

In depth, interviews were conducted with 17 British people with CFS/ME. Ages ranged from 13 to 63 years and the sample included six men and 11 women. Family circumstances were divergent ranging from those with children at home, older children living away, geographical dispersed families, separated families and those in retirement. Up to three interviews were conducted with each person to help to build up trust (Cornwell, 1984; Hosie, 1986). Participants were asked to start their narrative by

Findings

Everyone in the study began with a restitution narrative. The restitution narrative was evidenced in three phases: at the onset, in gaining a diagnosis and in seeking treatment. At the onset, no one was aware that their symptoms may have been related to CFS/ME. Everyone believed that they had the flu or an acute viral illness. As such, everyone treated the symptoms as a minor acute illness. Time was taken off from work or school as necessary; people adopted the traditional ‘sick role’ (Parsons,

Discussion

The analysis reveals that for the majority of participants, restitution, chaos and quest narratives all surface as dominant narratives in the experience of living with CFS/ME. Two narratives revealed restitution and chaos narratives only. All narratives began with participants describing the onset of acute symptoms. These were contrasted against a picture of good health preceding the onset. The symptoms were normalised as flu and people attempted to continue with everyday routines. They sought,

Limitations of the study

In the area in which the study was conducted, a CFS/ME clinic was available. The resonance of these findings to a wider population of people living with CFS/ME will be tempered by the access most people in the study had to a CFS/ME clinic. One-quarter of the people interviewed in this study had been referred to the CFS/ME and the pathway to a diagnosis of CFS/ME for people who do not have access to a CFS/ME clinic is unlikely to include such a referral.

The study has identified a possible

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