“I am only half left” – a qualitative exploration of long COVID patients’ existential loss and its impact on their identity and wellbeing

Long COVID (LC) can challenge patients’ wellbeing in a multitude of ways (e.g., physical, cognitive, emotional, social and financial) and thus can significantly disrupt their everyday lives. A growing body of literature has captured how living with LC may ‘spoil’ patients’ identity, shattering people’s capability and motivation to resume commitments that are central to their core identity. Based on a large dataset of 80 interviews with LC patients collected from across the UK between 2021-22, we argue that the impact of LC may run deeper than simply losing one’s identity. Rather, the ongoing experiences of learning to cope with LC are inextricably connected to a sense of loss at a more existential level. Our data has revealed that the multifaceted constraints and uncertainties around LC can threaten the integrity of patients’ taken-for-granted self and also give rise to painful realisations of their frailty, finitude and even mortality. These deeper pains may further shape the way that they plan and anticipate their future (e.g., career, family, health, death or life in general), forcing/enabling patients to fundamentally and continuously review their selfhood. Despite this, the resilience and agency of our participants were also highlighted by our data, demonstrating the possibility of experiencing existential growth in their identity and wellbeing in the face of distressing losses. These conflicting pictures have illustrated the importance of better understanding and further supporting LC patients’ deeper (and often abstract) loss of identity, providing grounds to further improve holistic support for LC patients alongside their illness trajectories.