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

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 peopleʹs 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.