The Disrupted and Realigned Self: Exploring the Narratives of New Zealanders with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) causes pronounced, debilitating fatigue that is not alleviated by rest, along with muscle and joint weakness, pain, cognitive difficulties and can be worsened through mental and physical exertion. However, it is also without an aetiology, and there is little consensus amongst both medical and patient spheres as to what CFS/ME actually is. In this thesis I draw on interviews with people with CFS/ME and participant observation in a patient-led support group in order to explore the way in which CFS/ME shaped participants’ identities and narratives of the self. I argue that participants moved through two stages that I call ‘The Disrupted Self’ and ‘The Realigned Self’. Falling ill with CFS/ME rapidly disrupted participants’ understandings of the bodies, their position within their family and the community, interactions with doctors, and all the usual markers on which they had previously formed their self-identities. In this state, I argue that participants and those with whom they engaged viewed both CFS/ME and my participants as liminal, ‘betwixt and between’ (Turner 1969) social roles and contemporary New Zealand ideals of illness, the individual, and the ‘sick person’. As the initial disruption and confusion of falling ill subsided, however, my participants worked to develop a new secure self-identity, the ‘Realigned Self’. They move into a normalised long-term liminal state by prioritising their health, adjusting their expectations of their body, developing their own conception of the aetiology of CFS/ME and forming a positive narrative of their new lives. This identity work utilised wider cultural ideals about the active, responsibilised and authentic self; common to late modern contemporary life (Beck and Beck-Gernsheim 2001, Desjarlais 1994, Giddens 1991, Rose 1996). Yet this realignment was often not reflected in the views of my participants’ friends, families and doctors. This illustrates the diverse perspectives and different degrees of liminality that exist within experiences and narratives of CFS/ME and contested illnesses.