‘The Second Arrow’: A Collaborative Autoethnographic Exploration of What Can Be Learned From One Long COVID Journey

Introduction

Long COVID is a complex multisystem illness with multiple relapsing-remitting symptoms, which can vary in severity and impact people's daily lives. This study utilises the first author's experience of falling ill with and recovering from long COVID to investigate the lived experience of the illness. Learnings that could positively influence how people with long COVID, and health professionals, approach rehabilitation and recovery from the illness going forward are identified.

Methods

Employing collaborative autoethnography, the first author investigated her personal experience of falling ill with, and rehabilitating from, long COVID, while soliciting input of the second author (an athletic therapist and physiotherapist, and researcher with expertise in chronic pain) for the purpose of analysis and interpretation. Reflexive thematic analysis was employed across a number of data sources available to the first author, including journal entries, text messages, emails, and pharmacy receipts.

Results

Four themes were generated from the data, supported by a number of subthemes: (i) Psychosocial impact of long COVID, (ii) Invalidated, (iii) Validated, and (iv) Power and Ownership. The negative impact of a siloed and reductionist approach to care for long COVID is evident in the findings of this study. In addition, the need for healthcare environments that enhance autonomy and empowerment, and that implement patient-centred care, where the person living with chronic illness is supported to engage in management strategies that meet their needs, is underlined.

Conclusion

This study highlights the detrimental cost, both personally and financially, of the ongoing use of the biomedical model of care in the treatment of long COVID. Findings support the need for an interdisciplinary approach to care that considers the whole person and adopts a biopsychosocial approach to care. Furthermore, the need for healthcare professionals to actively listen to, respect, validate and support the person living with long COVID on their individualised recovery journey is evident.

Patient or Public Contribution

The first author was a long COVID patient, the context and extent of this is explained within the paper. As such, this paper is developed and written primarily from the perspective of a patient, as a first-hand narrative of the recovery journey from the illness, with the insights of a clinician (second author) providing context and the potential for a broader understanding of the journey. The goal of this work is, through the dissemination of the paper's findings, to improve pathways and outcomes for others living with long COVID.