'I could almost just disappear, and would anyone really notice?' Precariousness and precarity when living with a life-limiting or life-threatening condition during the coronovirus (COVID-19) pandemic in the UK

Earle, Sarah; Blackburn, Maddie; Lizzie, Chambers; Downing, Julia; Flemming, Kate; Hale, Jamie; Marston, Hannah; O'Dell, Lindsay; Sinason, Valerie; Watts, Lucy and Whitney, Sally (2021). 'I could almost just disappear, and would anyone really notice?' Precariousness and precarity when living with a life-limiting or life-threatening condition during the coronovirus (COVID-19) pandemic in the UK. In: European Sociological Association Conference: Sociological Knowledges for Alternative Futures, 31 Aug - 3 Sep 2021, Barcelona, Spain.

URL: https://www.europeansociology.org/conference/2021

Abstract

Living with a life-limiting or life-threatening condition (LLTC) is a precarious embodied state. Not only do individuals need to constantly adjust to the challenges of living with complex, often progressive, chronic illness but they also contend with a lack of diagnostic certainty. Living with a prognosis of comparatively premature death is a constant existential and material threat to human existence, highlighting what Butler (2004) describes as the ‘corporeal vulnerability’ of (all) human life: a fundamental form of precariousness.

As disability scholars have previously highlighted (for example, Knight, 2014), precariousness is not equally distributed; the coronavirus pandemic is deadly, but not uniformly so (Abrams and Abbott, 2020). In the UK people with ‘pre-existing’ or ‘underlying health conditions’ have been casually and repeatedly referred to as those most at risk of dying from COVID-19 in attempts to reassure the wider population that they are unlikely to die. This othering has served to render the precarity of those with living with LLTCs simultaneously visible and invisible.

This paper draws on an inclusive qualitative research study based on in-depth interviews with 26 young adults (aged 18-40) with LLTCs living in the UK. Using a constructivist grounded theory approach, we explore the experiences of ‘shielding’ and ‘lockdown’ during the first wave of the COVID-19 pandemic. In particular we examine the context of participants’ embodied precariousness and precarity in relation to the rationing of limited healthcare resources, an increased reliance on private domestic care and intensified social isolation finally reflecting on their imagined post-COVID future.

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