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Background: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.Methods: Unlike any previous pandemic in history, online Covid communities and 'citizen science' have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020. Results:The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the lifechanging impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.Conclusions: Long Covid does not easily fit into the dominant evidence-based

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