Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

It has been estimated that by the year 2014 there will be a 12 per cent increase in the number of adults with at least one chronic illness condition (Carrier, 2009). The turn to caring for those with a chronic illness at home has resulted in carers having an increased risk of developing health problems (Ohman & Soderberg, 2004). As such there is a need to understand how families manage and cope with illness at home. This study has examined the effect chronic illness had on not only the woman with illness, but also the immediate family closely involved with her care. Additionally the study has sought to address the effect chronic illness had on the 'self' and 'identity' of these three women and to determine what extent and impact the illness process had on the relationships within this family. The study used open-ended biographic narrative interviews to elicit data. The research revealed that each woman experienced change and loss to both 'self' and 'identity' albeit in different ways. Interestingly and of significance is the way these women in their narrative accounts revisited their past lives in implicating and accounting for the present and the future (Freeman 2010). It was discovered that the past history and past relationships of these women affected how they each responded to illness and each other in their present circumstances.

Medical advancements and research initiatives in the last two decades have changed the experience of growing up with a chronic illness. Young people living with Cystic Fibrosis (CF), a chronic, life-threatening, life-limiting, genetic disease, have benefitted from these advances and are living fuller, healthier, longer lives than previously thought possible. Literature exploring the experiences of young people living with CF has traditionally relied on information from caregivers and health care practitioners. It does not reflect the diverse experiences of young people today, or explore the subjective meanings constructed from experiences. Using a social constructionist and narrative inspired methodology, this study explores illness narratives and identity constructions among three young women living with CF. Their narratives are broad and diverse. Shared elements include; making meaning of their illness, and constructing a multi-faceted, relational, layered and flexible sense of self. The layered experiences of CF are one of many important factors influencing their unfolding identity. Relational processes and socially constructed norms and expectations of illness, health, and gender also influence participants’ unfolding sense of self. This study demonstrates the value of rich conversations exploring identity construction and illness narratives, and the complexities and nuances within individual experiences. / Graduate / 0758

Medical advancements and research initiatives in the last two decades have changed the experience of growing up with a chronic illness. Young people living with Cystic Fibrosis (CF), a chronic, life-threatening, life-limiting, genetic disease, have benefitted from these advances and are living fuller, healthier, longer lives than previously thought possible. Literature exploring the experiences of young people living with CF has traditionally relied on information from caregivers and health care practitioners. It does not reflect the diverse experiences of young people today, or explore the subjective meanings constructed from experiences. Using a social constructionist and narrative inspired methodology, this study explores illness narratives and identity constructions among three young women living with CF. Their narratives are broad and diverse. Shared elements include; making meaning of their illness, and constructing a multi-faceted, relational, layered and flexible sense of self. The layered experiences of CF are one of many important factors influencing their unfolding identity. Relational processes and socially constructed norms and expectations of illness, health, and gender also influence participants’ unfolding sense of self. This study demonstrates the value of rich conversations exploring identity construction and illness narratives, and the complexities and nuances within individual experiences. / Graduate / 0758

Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

Background and aims: Cystic Fibrosis (CF) is the most common genetic, life threatening disorder in the UK (Cystic Fibrosis Trust, 2010). Given the trajectory of the illness, adolescence may be a particularly challenging period, during which young people become more aware of differences from peers, and are faced with the task of balancing increasing illness demands with the drive to aspire to developmental goals. Nevertheless, little research specifically explores how young people with CF reconcile their illness experiences with the emerging sense of self. In an attempt to address this gap in the literature, this study sought to hear the narratives of young people with CF with reference to the local and broader contextual factors influencing their construction, with the aim to further understanding, inform clinical practice and improve support for young people with CF. Methodology: A qualitative approach was employed. A purposive sample of six participants diagnosed with CF and aged between 12 and 16 years was recruited. Participants were asked to take photographs of their experiences of life as a young person with CF which were used alongside a semi-structured topic guide in individual interviews to explore the young person’s narratives. The interviews were audio-recorded, transcribed, and analysed using a narrative approach to explore both what was said and how it was told.Analysis and Findings: The researcher’s global impressions of each person’s narratives, along with details of the local context of the interview were presented. Following this, similarities and differences across the narratives were considered with particular attention to how the main storylines were interwoven with participants’ emotional experiences, the identity work taking place through the narrative, and the broader narratives available to them. It emerged that (i) CF was perceived as part of participants’ normality which they had grown accustomed to over time, (ii) participants drew on cultural narratives to position themselves as normal teenagers, to maintain a positive sense of self, though also leading them to minimise difficulties and distress, and (iii) participants continued to position themselves within the norm as they talked of their futures, describing similar hopes to their peers, and again played down concerns about how CF might impact on their futures. These findings are discussed with reference to the clinical implications, strengths, and limitations of the methodology, and directions for future research.

Through a study of the work of three important writers, this thesis engages with the traumatic memories of the second half of the twentieth century in Czechoslovakia in order to highlight the value of literature in widening critical understandings of the continuing legacy of this complex era, which was dominated by totalitarian regimes under the Communist governments which gained control after the upheaval of the Second World War. Whilst these years were not unilaterally traumatic, many lives were dramatically affected by border closures and by the experience of living under a regime that maintained control through methods including confiscation of property, surveillance, arbitrary imprisonment, show trials, and executions. Many of the stories of this era could not be published openly because of censorship, and the persecution of intellectuals led to a wave of emigration, during which a number of writers moved to France. Using theories of trauma, exile, illness, and of self and other, this thesis opens up a dialogue between the work of three writers who engage, albeit from very different perspectives, with this little-explored intersection between Czech and French. The first chapter explores Daniela Hodrová's translated Prague trilogy as a first-hand witness to her nation's dispossession and as a form of resistance to the deletion of memory. The second chapter considers the painful transgenerational legacy of the era as it plays out in the work of bilingual writer Jean-Gaspard Páleníček. Chapter Three considers the ways in which the Prague novels of established French author Sylvie Germain negotiate the fine line between an appropriation of the stories of the other and a moral responsibility to bear witness. By bringing these authors together for the first time and locating their work within French Studies, my work foregrounds the need for Western criticism to pay attention to other valuable voices who can contribute to our understandings of the traumatic experience that has shaped modern history.

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