The Social Life of Migraine: A Meta-Ethnography of Lived Experience in Adults With Migraine

Abstract

Background: Migraine is a common and disabling neurological disorder that affects physical, emotional, and social functioning. Despite its prevalence, it remains under-recognized and stigmatized. Understanding the lived experience of migraine is essential to inform person-centred care and improve health system responsiveness. Objectives: To synthesize qualitative research on how adults experience, interpret, and cope with migraine, and to develop an interpretive model of its lived experience. Methods: We conducted a meta-ethnography following Noblit and Hare’s seven-phase approach, guided by the PRISMA 2020 and eMERGe reporting standards. Five databases were searched from inception to April 2025 for qualitative studies exploring the lived experience of adults with migraine. Two reviewers independently screened studies, extracted data, and appraised methodological quality using the Critical Appraisal Skills Programme (CASP) checklist. Concepts were translated across studies and developed into a line-of-argument synthesis to generate higher-order interpretations. Results: Forty-six studies were included, covering North America, Europe, Asia, and Australasia, with most participants being women. Four overarching domains were identified. First, embodied disruption and uncertainty captured migraine as an unpredictable and intrusive condition that fragmented bodily control and everyday life. Second, negotiating stigma and social legitimacy described the burden of living with an invisible illness that was often misunderstood, minimized, or doubted by others. Third, coping, adaptation, and identity work reflected the active labour of self-management, acceptance, and reconstruction of identity in the pursuit of agency. Fourth, seeking care and system navigation highlighted delayed diagnosis, therapeutic pessimism, fragmented care, and the search for validation. These domains recast migraine as more than recurrent neurological symptoms: it emerges as a biographically disruptive condition that must be continually managed and incorporated into one’s sense of self. Conclusion: Migraine is lived not only as a neurological disorder but as a socially embedded and biographically disruptive condition that reshapes identity, relationships, and participation in everyday life. Its invisibility and unpredictability create uncertainty and stigma, compelling individuals to reconstruct coherence and agency. Clinicians should design holistic, empathic migraine care that addresses these psychological and social realities.