Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: A longitudinal qualitative study
Section snippets
What is already known about the topic?
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Chronic illness is generally linked to the experience of biographical disruption and chronic fatigue syndrome/myalgic encephalomyelitis represents a chronic, often highly debilitating condition.
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The impact of illness on identity is generally held as negative, yet identity reconstruction can result in positive outcomes for people with chronic fatigue syndrome/myalgic encephalomyelitis and other chronic conditions.
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Understanding how a positive outcome can be achieved is poorly understood.
What this paper adds
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This study has found that it is possible to reconstruct a new and positive self-identity following the onset of chronic fatigue syndrome/myalgic encephalomyelitis.
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Identity reconstruction can be seen to follow a trajectory containing three phases, characterised for the majority by total debilitation in the acute phase, to disability as part of the total self in the medium term and a positive self-identity in the longer term.
Introduction and background
Work around identity and illness can be broadly divided into the study of the impact of illness on identity and consequent need for reconstruction and emergent identities. Key areas are the impact on biography (Bury, 1982), life story (Frank, 1995; Williams, 1984), and explanatory models (Helman, 1991; Kleinman, 1988). When the body changes, uncertainties around definitions of the self arise (Ciambrone, 2001). Individuals need to work out how to explain the illness to themselves and others (
Methodology
The study was guided by hermeneutic phenomenology drawing on the work of Heidegger (1962) and Gadamer (1975). This methodology reflected the descriptive and interpretative quality of the research question that underpinned the study: ‘What does the experience of CFS/ME mean to people who are experiencing this state of being-in-the-world and their families?’
The methodology focused the approach taken more fully on the importance of recognising and acknowledging the preunderstandings that the
Findings
The analysis presents the reconstruction of self-identity following the form of a trajectory with three stages, the acute, medium and longer term.
Discussion
The study has resulted in the mapping of a trajectory that reflects elements of earlier work but also many differences. Unlike the trajectory of identity noted for chronic progressive conditions (Charmaz, 1983) that found deterioration in identity, the current study found both that different priorities were set and that identity became progressively more positive. The trajectory reflected Yoshida's work that identities were pendular and could move backwards to a past identity and forwards to a
Conclusion
This study has revealed that the lived experience of CFS/ME can be seen to follow a trajectory in relation to the reconstruction of self-identity and that individuals and families narratives may be different at each stage of the illness. This level of understanding is important in promoting shared understanding and so the engagement of nurses and health care professionals in the assessment and management of people with CFS/ME. Whilst this work has a wider resonance not only with work into
Limitations of the study
There are a number of limitations to this study. The sample selected was drawn from an area in which a CFS/ME clinic was available. Referral to the clinic often took some time, but it did provide a means of validating a diagnosis of CFS/ME. This may make the experiences of this group different to those without access to a CFS clinic, although only a proportion of the sample had been referred to the clinic. In order to qualify some of the concepts put forward in the paper, further work with
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