Self within a climate of contention: Experiences of chronic fatigue syndrome
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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2020, Social Science and MedicineCitation Excerpt :This means that at a societal level, the version of CFS/ME being produced for public display "is not a true reflection of the illness" (Chew-Graham et al., 2008) (p. 343), with all the subsequent lost opportunities for recognition and help. Those who do disclose their condition are taking a risk, as significant others and/or professionals respond variably, with reactions ranging from disbelief (Cooper, 1997; Dickson et al., 2007; Travers and Lawler, 2008), through to recognition and acceptance (; Chew-Graham et al., 2011; Pinxsterhuis, Hellum, Aannestad and Sveen, 2015b). Financial support, via disability benefits needed by people with severe symptoms, is perceived as difficult to obtain, due to problems with legitimisation from government institutions.
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