Background : Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing and poorly understood. Exploring the experiences of people with long COVID could help inform current conceptualizations of the illness, guide supportive care strategies, and validate patients' perspectives on the condition. Thus, the objective of this 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 following a confirmed or suspected SARS-CoV-2 infection who participated in a larger observational, online survey. Within the larger 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 the 213 who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40-49 (33.1%), and who had been experiencing long COVID symptoms for ≥ 6 months (58.6%) responded to the open-ended questions. Four overlapping and interconnected themes were identified: (1) My long COVID symptoms are numerous, hard to describe, and debilitating , (2) All aspects of my day-to-day functioning have been impacted , (3) I can no longer be physically active , and (4) I keep asking for help, but no one is listening, and very little is working . Conclusion : Findings highlight the complex nature of long COVID and show the ways in which individuals affected by the illness are negatively impacted. Participants recounted struggling and altering their daily activities while managing relapsing-remitting symptoms, an uncertain prognosis, lost pre-COVID identities, and a healthcare system (that does not always offer guidance nor take them seriously). More support and recognition for the condition are needed to help this cohort navigate the process of adapting to long COVID. ### Competing Interest Statement JDM is a physiotherapist and owner of Breath Well Physio (Alberta, Canada) and has been treating people living with long COVID in private practice since July 2020. JDM and RT run a free virtual program for people living with long COVID in Alberta, Canada, in collaboration with Synaptic Health (Registered Charity No. 830838280RR001). JDM delivered a paid course for rehabilitation professionals working with people with long COVID in April 2021. The authors have no other conflicts of interest to disclose. ### Funding Statement This study was not funded. However, AW was supported by a Canadian Institutes of Health Research Fellowship and an Alberta Innovates Health Solutions Fellowship during data analysis and manuscript preparation. RT was supported by the O'Brien Institute of Public Health and Ohlson Research Initiative, Cumming School of Medicine, University of Calgary and a Canadian Institutes of Health Research Fellowship during this study. JGW was supported by the Hotchkiss Brain Institute and the Cumming School of Medicine, University of Calgary. NCR was funded by the Canadian Cancer Society and Canadian Institutes of Health Research. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Conjoint Health Research Ethics Board of the University of Calgary gave ethical approval for this work (REB21-0159). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes Qualitative data are summarized in the manuscript. De-identified quantitative data for the wider study are available online at: https://osf.io/dxu63/.
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