Elsevier

Social Science & Medicine

Volume 66, Issue 2, January 2008, Pages 315-326
Social Science & Medicine

Self within a climate of contention: Experiences of chronic fatigue syndrome

https://doi.org/10.1016/j.socscimed.2007.09.003Get rights and content

Abstract

Chronic fatigue syndrome (CFS) is a contested condition associated with scepticism and dispute. This qualitative project examines the illness experiences, and specifically the experiences of self, for people affected with CFS living in Australia. Using grounded theory methods, theory related to the process of self-renewal and adaptation associated with CFS is explicated. Narratives were derived from semi-structured interviews with 19 adults, including 3 people recovered from CFS. Analysis generated the narrative of the struggling self seeking renewal that defined the illness experience of CFS. The struggling self articulated the negative effects to self and personhood associated with CFS, defined as the violation of self, and the consequent efforts of participants to manage symptoms and decrease their violation by use of what was termed the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The struggling self occurred within a climate of threats, and it was these threats which provided the catalyst for violation and the responses. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

Section snippets

Background

The potential for chronic illness to disrupt the integrity of self-perceptions has been well documented and there is a substantial body of research that describes a general process of damage and repair to self. Chronically ill people have been described, for example, as “transcending the self” (Lindsey, 1996, p. 465) “regaining a valued self” (Swanson & Chenitz, 1993, p. 270), or developing a “redefinition of self” (Anderson, 1991, p. 712). These transformative findings provide a partial

Method

A social constructivist paradigm provided the epistemological and theoretical basis for the project. This position regards knowledge as arising from socially and experientially constructed multiple realities that are relative to culture, history and place (Guba & Lincoln, 1994) and was ideally suited to the investigation of the experiences of a contested illness. A grounded theory approach and illness narratives provided the methodological basis. Ethical approval for the project was obtained.

To

Experience of CFS: struggling self seeking renewal

The experience of CFS was encompassed within the narrative of the struggling self seeking renewal, which articulated the effects of CFS on the participants and their consequent responses. The struggle arose from threats, while the effects were described as a violation that encompassed the negative and undesirable consequences to self, identity and personhood associated with CFS. Two categories of responses that served different purposes and employed different strategies were implemented by

Discussion

The illness experience of CFS is a process of ongoing adjustment involving threats of disruption and invalidation, violation to self and responses of guardianship and reconstruction aimed at self-reclamation and self-renewal. The struggling self seeking renewal was a complex story of loss, adaptation, endurance, healing and uncertainty. It was also a story of suffering that, given the contested nature of CFS, was largely unacknowledged by others. Suffering as a pervasive dimension of CFS (Hyden

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