Reframing health and illness: a collaborative autoethnography on the experience of health and illness transformations in the life course

Abstract

In this collaborative autoethnography, we examine the processes whereby people may reframe their interpretations and understandings of health and illness as a result of new diagnostic information. In so doing, we utilise the first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine. Furthermore, we discuss the ways this case reveals the importance of examining and comparing the social construction and transformation of health and illness within and between different individual and collective lived experiences over time. In closing, we draw out theoretical and empirical implications for understanding transformations in the nature of health and illness over the life course as well as future directions for research investigating shifts in illness management and understanding over time (A virtual abstract of this paper is available to view at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

Performingcare: emotion work and ‘dignity work’ – a joint autoethnography of caring for our mum at the end of life

“…Much less often seen in the literature are joint ethnographies. For an exception, we refer the reader to Nowakowski and Sumerau's (2019) collaborative autoethnography on the experience of health and illness transformations in the life course. Nonetheless, it is Nowakowski's experience of receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis that is drawn on, in order to outline ways in which changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine.…”

The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis

“…In this regard, the research literature on CF embodiment remains very much in a developmental phase. Interest in experiences of aging with CF (Nowakowski and Sumerau 2019) and gendered embodiment in CF patients (Willis et al 2001) has become increasingly mainstream in both the scientific and clinical communities. Reflecting this, the 2018 BreatheCon event, coordinated by the CF Foundation, offered sessions focused on aging for the first time ever.…”

“…I remain both open to transplantation in the future and conscious of how it would require me to renegotiate my body in both general and gendered context (Nowakowski 2018). That said, complications from my own CF have already led me to undergo a variety of other surgeries that acclimated me to the process of adjusting to dramatic changes in the appearance of a particular body part (Nowakowski and Sumerau 2019) and the unique dynamics of those negotiations for me as an agender person (see (Willis et al 2001)).…”

“…Because I very much did not want to weather the agony of my face literally eating itself, I scheduled a surgical consult. This gave way to a series of five surgeries over an 18-month period, involving the following interventions: removing all four of my diseased wisdom teeth, harvesting connective tissue from the roof of my mouth, stitching the harvested tissue down around the exposed roots of my remaining teeth, stretching the grafted tissue to extend it, and repeating the process (Nowakowski and Sumerau 2019). Each recovery involved several days of spitting out surgical plastic and rubber sutures caked with blood and thickened mucus.…”

“…It is genetic; most people with the disease experience symptoms beginning at birth (Cutting 2015). It is also associated with earlier death, despite recent advances in treatment that have prolonged life expectancy (Nowakowski and Sumerau 2019). The disease results from problems with a protein that moves chloride (a salt component) in and out of cells.…”