Contested illness and communication: Positioning long Covid in online discussion forums

The World Health Organization (WHO) officially acknowledged long COVID as a post COVID-19 condition in 2021. Emerging research shows that long COVID may be considered a contested illness due to unknown causal mechanisms, diagnostic uncertainty, poor recovery/treatment outcomes and people reporting illness dismissal experiences when seeking healthcare. Informed by the sick role and positioning theories, this study explored people's experiences of seeking healthcare for long COVID by examining posts in two online forums (Mayo Clinic Connect and Reddit, from June and July 2023). Template analysis helped to identify12 forum threads containing a total of 305 posts. Inductive thematic analysis of posts identified three themes: (a) 'The concept of time', (b) 'The importance of symptom legitimacy', and (c) 'Responding to diagnostic dismissal'. Healthcare professionals are critical in validating the patient experience without a formal long COVID diagnosis, and in supporting long COVID recovery needs by acknowledging heterogeneity and diagnostic difficulties.