Abstract
It is estimated that in the UK around 2 million people are living with ‘Long COVID’ and,
of those, more than half are reporting difficulties with cognition. Qualitative literature
on the lived experience of Long COVID is limited and lived experience of cognitive
symptoms more limited still. Meanwhile, the importance of having guidelines for
managing Long COVID reflect lived experience of the condition has been
acknowledged. This study explored the lived experience of living with Long COVID
and cognitive symptoms with 11 participants in the UK. Verbatim transcripts of
semi-structured interviews were analysed using interpretative phenomenological analysis
(IPA). The analysis identified five Group Experiential Themes (GETs); Uncertain and
unsafe; Navigating a novel condition; Anger and injustice; Grief and loss; and
Adjustment and meaning-making. Experiences were influenced by contextual factors,
such as the pandemic as well as personal and social histories, and can be understood
using models of invisible illness disability. Findings were broadly consistent with the
current literature on lived experiences of Long COVID, however additionally highlight
the profound emotional toll of this experience. Grief and loss particularly are described
in the literature as part of adjustment to living with a chronic illness. Implications for
clinical practice and future research are discussed.