Abstract:
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.
