"I feel like my body is broken": exploring the experiences of people living with long COVID

PURPOSE: Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing, poorly understood, and reduces quality of life. The objective of this sub-study was to better understand and explore individuals' experiences with long COVID and commonly reported symptoms, using qualitative data collected from open-ended survey responses. METHODS: Data were collected from adults living with long COVID who participated in a larger observational online survey. Participants had the option of answering seven open-ended items. Data from the open-ended items were analyzed following guidelines for reflective thematic analysis. RESULTS: From 213 participants who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40–49 (33.1%), who had been experiencing long COVID symptoms for ≥ 6 months (74%) provided open-ended responses. Four overlapping and interconnected themes were identified: (1) Long COVID symptoms are numerous and wearing, (2) The effects of long COVID are pervasive, (3) Physical activity is difficult and, in some cases, not possible, and (4) Asking for help when few are listening, and little is working. CONCLUSION: Findings reaffirm prior research, highlighting the complex nature of long COVID. Further, results show the ways individuals affected by the illness are negatively impacted and have had to alter their daily activities. Participants recounted the challenges faced when advocating for themselves, adapting to new limitations, and navigating healthcare systems. The varied relapsing–remitting symptoms, unknown prognosis, and deep sense of loss over one's prior identity suggest interventions are needed to support this population. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-022-03176-1.