Living with Long Covid: A Qualitative Analysis of Experiences, Coping Strategies and Care across the Illness Journey in Switzerland

Background: Long Covid affects millions worldwide and disrupts the personal, professional, and social lives of those affected. Yet, insights on the day-to-day experience of living with Long Covid, how people adapt to the condition, and how they experience care remain limited. Methods: Between November 2024 and February 2025, we recruited people living with Long Covid through Long Covid related studies and patient networks. Data were collected through a one-time semi-structured survey, completed using a speech-to-text feature with automatic transcription, and addressing 1) key events and experiences, 2) coping and support strategies, and 3) advice to others affected. We applied an inductive thematic analysis to develop a framework of key themes. Results: We included 137 participants (median age 48 years, 73.7% women, median three years since SARS-CoV-2 infection). Analysis yielded 13 sub-themes within four key themes: medical issues; social, occupational and health care impact; barriers to recovery; and resources and strategies. Participants described a broad range of symptoms, most notably fatigue, cognitive difficulties, post-exertional crashes and psychological symptoms including depression and, in some cases, suicidal thoughts. These symptoms profoundly disrupted their social, working and family lives. In severe cases, independent living became impossible, with social isolation, severely reduced activity, and financial difficulties. Many described a long diagnostic journey in which symptoms were frequently dismissed as psychological and early advice to stay active that worsened their condition. The health care and social security systems were seen as ill-equipped to support people affected by Long Covid. With no effective causal therapies, treatment focused on symptom relief and participants tried many complementary and alternative treatments. Pacing was the only strategy widely used and perceived as effective in preventing crashes, alongside lifestyle adjustment, peer support, and maintaining hope. Conclusion: These narrative accounts reveal a multidimensional burden of Long Covid, one that is exacerbated by how affected people are treated within the health and social systems. These findings underscore the need for empathic, knowledgeable care, validation of people's experiences, and policy frameworks equipped to recognize and support people with Long Covid. Patient or Public Contribution: This study is about the lived experiences of people affected by Long Covid. During the conceptualization phase, we consulted three people with lived experience of Long Covid to discuss the relevance of the research questions and study design. All participants received a newsletter with a plain language summary of interim findings. Following completion of this analysis, we conducted a focus group discussion with eight participants to validate our findings, identify gaps, and ensure that the findings accurately reflected their experiences. Feedback from this process informed the final manuscript.