The lived experiences of social stigma among individuals with multiple sclerosis: a qualitative phenomenological study using Colaizzi’s method

Multiple sclerosis (MS) is a chronic neurological disease associated with physical, psychological, and social challenges. Beyond the burden of neurological symptoms, individuals with MS may experience social stigma that affects their identity, relationships, emotional well-being, and participation in daily life. However, limited qualitative evidence exists regarding how individuals with MS experience and interpret stigma within the Iranian cultural context. This study aimed to explore the lived experiences of social stigma among individuals with multiple sclerosis. A qualitative phenomenological study was conducted using Colaizzi’s descriptive phenomenological approach. Participants were selected through purposive sampling with maximum variation among individuals diagnosed with multiple sclerosis. Data were collected through semi-structured, in-depth individual interviews conducted with 20 participants recruited from neurology clinics affiliated with the University of Isfahan, Iran. Interviews were audio-recorded, transcribed verbatim, and analyzed according to Colaizzi’s seven-step method. The rigor of the study was ensured using Lincoln and Guba’s criteria. Analysis of the interviews resulted in three main themes: (1) social isolation, (2) psychological and social consequences of stigma following MS diagnosis, and (3) coping strategies for managing stigma. Social isolation included experiences of discrimination, rejection, and loss of self-worth. Participants described being perceived as incapable or dependent after diagnosis, resulting in reduced social participation and altered relationships. The Psychological and Social Consequences of Stigma included uncertainty about the future, depressive feelings, and fear of judgment, rejection, and disability. Coping strategies included concealment of illness, self-destructive responses, and spirituality as a source of emotional support. Social stigma represents a substantial psychosocial burden for individuals with multiple sclerosis and influences their identity, emotional health, relationships, and adaptation to illness. MS care should incorporate stigma assessment, psychological interventions, family education, and social support programs to reduce stigma-related consequences and improve quality of life.