Shifting normalities: interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis

Abstract

Biographical disruption and related concepts have been widely applied in chronic illness. Different conceptualisations of normalisation have also been proposed in order to explain individuals' diverse responses to illness on their biography, but as yet, not clearly related to changing bodily experience or normalisation of symptoms. This article aims to examine the relevance of these concepts in rheumatoid arthritis (RA), an unpredictable autoinflammatory disease characterised by painful and swollen joints, disability, fatigue and joint damage. Interviews were conducted with 23 people living with RA, and analysed using Framework, to enable people's whole narratives and context to be considered. Six typologies of normality emerged from the data: disrupted; struggling to maintain; fluctuating; resetting; returning; and continuing normality. Multiple normalities were often present in individuals' narratives, with one normality typology usually dominating at the time of the interview. The typologies connect to several biographical concepts, and instances of 'biographical reinstatement' were also found, where participants described returning to normal life, through perceived effective medication rather than reconceptualisation of health. The concept of 'shifting normalities' is proposed, providing a dynamic explanatory model of chronic illness that captures the interaction of changing conceptions of a normal life and the normalisation of symptoms.

Working to establish ‘normality’ post-transplant: A qualitative study of kidney transplant patients

“…The absence of struggling and fluctuating normality may also be linked to the resilience of this set of patients and their experiences of both ill health and of self management. As Sanderson et al note (10), the typologies of normality represent different moral positions. Whereas disrupted normality presented the greatest challenge to self worth and identity, our study participants had the capacity, experience and resilience to cope.…”

Living in the Present

“…Contemporary explorations of the lived experience of chronic conditions such as RA highlight the ways in which people re-author their lives in the context of disability, creating new ways of understanding themselves and their relationships with others (Reeve, Loyd-Williams, Payne, & Dowrick, 2010;Rice, Chandler, Harrison, Liddiard, & Ferrari, 2015;Sanderson, Calnan, Morris, Richards, & Hewlett, 2011;S. Williams, 2003).…”

“…Contemporary conceptualizations of the self as an embodied and active agent challenge the notion of disruption as allconsuming and permanent (S. Williams, 2003), reflecting Sanderson et al's (2011) proposition that "biographical disruption may form only one part of a person's multilayered illness narrative" (p. 630).…”

“…These negotiations were not only practical in their focus but also often entailed a fundamental rethinking of meanings made and values held. Sanderson et al (2011) describe this re-framing of self as a form of narrative reconstruction, a process of creating "points of reference between the (changed) body, self and society, reconstructing the past so that it has meaning or purpose for the present" (p. 619). The process is dynamic and open, allowing for "the weaving of "new symptoms, new knowledge of the condition, and new reactions from others into the story" (Sanderson et al, 2011, p. 619).…”

“…For some women, assistive aids and other adaptations facilitated their participation in the everyday activities integral to the performance of "being normal." For these women, achieving "normal" included a readjusted understanding of particular roles and activities, and a reconstructed self which embraced adaptations (Sanderson et al, 2011). Adaptation was not a presumed practice.…”