“I just feel like every day I’m missing out”: Young people’s experiences of living with Long Covid

Background. Long Covid is a multi-system condition that profoundly disrupts people’s everyday lives. While research on adults’ experiences is growing, little is known about its impact on young people. This study sought to address this gap, gaining an in-depth account of the experiences of young people with Long Covid. Methods. We adopted a participatory qualitative design, combining expertise from young people with Long Covid, and adults with experience of Long Covid and academic research, as co-researchers throughout the study. We conducted individual semi-structured interviews with 13 young people, aged 13 – 20 years (M = 16.6, SD = 2.1) between August 2024 and May 2025. Interviews focused on phenomenological experiences, education, social life, healthcare experiences, perceived impact of Long Covid and future hopes. We analysed the data using reflexive thematic analysis within an essentialist framework. Results. We identified four themes: (1)“It’s kind of been relentless”, describing the sudden onset of debilitating symptoms, pervasive fatigue, and invalidation by healthcare professionals; (2)“It really kind of takes away your identity”, highlighting profound disruptions to education, hobbies and social relationships – and to young people’s emerging sense of self; (3)“The supports just aren’t there”, reflecting systemic failures in healthcare and education, alongside stigma and inequities; and (4)“The uncertainty is quite difficult to live with”, capturing the mental toll of the associated unpredictability and isolation. Conclusions. Our findings demonstrate that Long Covid exerts far-reaching effects on young people’s physical health, identity, education and mental wellbeing, compounded by systemic shortcomings and stigma. Addressing these challenges requires coordinated action across healthcare, education and policy domains, with inclusive, holistic supports co-designed with young people themselves.