This thesis explores the experiences of parents with disabled children living without a diagnosis. Through thematic and narrative analysis of an in-depth qualitative interview study with 26 parents of disabled children, and by considering absent diagnosis in the context of sociological and other relevant theory, this thesis contributes to knowledge about diagnosis and about the experiences of families of disabled children without a diagnosis. The process of diagnosis, categories of diagnosis, and the consequences of living without a diagnosis are examined. Using interview data, including parent narratives and personal reflections, this thesis tells multiple stories revealing a play of diagnosis journeys: that of the parent participants living without a diagnosis; that of the researcher’s exploration of diagnosis; and that of the sociological significance of diagnosis. The hermeneutic journey of the literature review process is described, as the domains of sociology and medicine have shifted shape over the years of the study. I make sense of the sociological relevance of the empirical data generated, with a particular focus on the sociology of diagnosis, ethnographic studies of paediatric genetic diagnosis, and research with families with disabled children. Despite the estimated high prevalence of disabled children without a diagnosis, there is, as yet, little research with families and to date absent diagnosis in this context has not been considered by the sociology of diagnosis. That the absence of diagnosis can hold a mirror to diagnosis, and how absent diagnosis acts to expose the meanings of diagnosis, is proposed. And further, to know the nucleus of diagnosis we must look at what happens in its absence, considering the space non-diagnosis leaves and the differentiality on which diagnosis abuts. I embrace a natural history approach to methodology describing the methodological journey. Further depth is added to thematic data analysis by using a narrative approach to consider parents’ stories, and by punctuating the thesis with interludes of self-reflexive accounts of the researcher’s own story of living without a diagnosis. Key themes from the thematic and narrative analysis are reported: parents commonly conducted an intensive quest for diagnosis; perpetuity was a feature of this process of diagnosis, although searching for and interest in diagnosis commonly decreased over time; parents were active contributors to the process of diagnosis; parents had difficulty making sense of living without a diagnosis, and themes of fracture and deferral were identified; parents’ narratives had features of the chaos, quest and restitution typologies reported by Arthur Frank (1995), with an unresolved quest narrative as the core typology across parent accounts; a common metaphor of stasis of movement was identified in parent narratives. Key areas parents perceived not having a diagnosis had impacted on were: aetiology (not knowing what caused their child’s disability and what the risk of recurrence was); prognosis (not knowing what to expect in the future from their child’s health and development); access to support and services (including formal services and informal parent-to-parent support); and managing social interaction (how to describe their child’s disability to others). Living without a diagnosis has material effects and the study’s findings are relevant for theory and practice in and beyond medicine.

This PhD thesis explores the phenomenon of resilience in people with spinal cord injury (SCI). The purpose of this research is to understand how resilience is experienced and given meaning in people with SCI, as well how resilience is fostered, how it impacts upon health and well-being, and how it can be managed to achieve maximum benefits with regard to health and well-being. It is the first in depth narrative investigation of resilience in people with SCI. Using both life story interviews and the process of timelining, participants stories were collected. Following this they were then analysed using dialogical narrative analysis (Frank, 2010, 2012). This enabled participants stories to be examined with regard to their effects on resilience and health and well-being. The analysis shows that firstly, due to the intangible nature of resilience, participants had trouble in articulating exactly what resilience meant to them. Instead, resilience was shown through participants stories which could be grouped into four different narrative types: loss, adaptation, posttraumatic growth (PTG), and life-as-normal. Together, these narrative types constructed resilience, and as such, resilience in people with SCI has four facets or faces , like a four-sided dice. The process of resilience in people with SCI worked by participants drawing upon the different narrative types at different times depending upon the demands being placed upon them. The loss narrative was drawn upon immediately following injury, and was concerned with the narration of the physical, psychological and social losses participants incurred following SCI. The loss narrative fostered resilience by enabling participants to talk about their losses, enabling participants to survive the hardest time of their lives. The second narrative type was the adaptation narrative. This narrative type focussed upon rehabilitation in both the spinal unit and in the community. This narrative type built resilience via progression through rehabilitation towards a quality of life comparable to pre-injury levels. The PTG narrative was concerned with the ways in which participants had developed following SCI and built resilience by shifting the focus onto the positives to come out of participants experiences of SCI. The life-as-normal narrative was used by two participants across their entire life story and enabled participants to continue with their lives with minimal disruption. It built resilience by placing disability in the background and therefore making it unimportant. This thesis then concludes with the empirical, theoretical, methodological and practical implications arising from this research. The potential for resilience to help improve the health and well-being of people with SCI is discussed, as well as the ways in which resilience can have a maximum benefit on health and well-being of people with SCI.

Five fan fictions based on the TV-series Shadowhunters are used to analyze the self-harming behaviors of the character Alec Lightwood, as a response to losing, and a method of regaining, control. In addition, this paper explores self-harm in relation to upbringing and culture, self-punishment, and the mental health disorders depression and anxiety. Furthermore, it employs a disability narrative perspective and utilizes two four-stage systems proposed by disability narrative theorist David A. Karp—the illness identity career and the process of adaptations—in order to demonstrate the similarities and differences between fictional and nonfictional disability narratives. The engagement in self-harm is posited to be driven by a desire to regain control, which inadvertently ends up providing the opposite: an increased loss of control, and a hindrance for recovery.