Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: A longitudinal qualitative study

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Abstract

Background

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is an illness associated with high levels of physical and cognitive disability over a prolonged period of time. Recovery from CFS/ME can be interspersed with relapses. Further, the legitimacy of the illness continues to be questioned within and beyond the health profession.

Aim

This paper examines the reconstruction of self-identity for those experiencing CFS/ME.

Method

This longitudinal qualitative study involved up to three in-depth interviews with 17 people with CFS/ME and family members.

Results

A trajectory that describes transitions in identity over time and the range of elements that influence these is proposed. During the acute phase of illness, characterised by total debility, people adopted the traditional sick role. The medium term phase highlighted movement between disability as part of the total self, total debility, and/or the adoption of a supernormal identity. The longer-term phase was defined for the majority of participants as the positive reconstruction of self. Identity was contingent with positive and negative experiences and responses co-existing with the potential to ‘tip’ the balance and perceived identity. In the longer term people's identity became more static with the development of coping strategies to maintain this. The trajectory can be described as pendular and movement between each type of identity was possible during all phases of the illness experience depending on the nature and impact of the illness and responses given to these. The proposed trajectory represents a dynamic model of identity reconstruction.

Conclusion

Understanding the patients’ experience and recognising that different stages may exist is important for health professionals. This awareness can enhance shared understanding and opportunities to work with people in negotiating the impact of illness.

Section snippets

What is already known about the topic?

  • Chronic illness is generally linked to the experience of biographical disruption and chronic fatigue syndrome/myalgic encephalomyelitis represents a chronic, often highly debilitating condition.

  • 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.

  • Understanding how a positive outcome can be achieved is poorly understood.

What this paper adds

  • 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.

  • 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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