Friday, March 1, 2013

Masters Thesis on CFS by Lara Bell

Source: Victoria University of Wellington (New Zealand)
Date: February 20, 2013

The Disrupted and realigned Self: Exploring the narratives of New
Zealanders with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Bell, Lara Joyce Milka


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.

(c) 2013 Victoria University of Wellington

No comments: