Between Visible Marks and Invisible Pain: A Qualitative Study of Multi-Layered Stigma Among Women with Systemic Lupus Erythematosus in China

Systemic lupus erythematosus (SLE) disproportionately affects women and often disrupts work, intimate relationships, and reproductive life. Although stigma is increasingly recognized in chronic illness, less is known about how it is experienced among women with SLE in China. Using an interpretive phenomenological design informed by health stigma theory, this qualitative study examined how stigma was produced, experienced, and managed in the everyday lives of 20 Chinese women living with SLE. Data were generated through semi-structured online interviews, chosen because of participants’ geographic dispersion and health-related constraints, and analyzed using an iterative thematic approach. The findings show that stigma operated through interconnected forms: visible bodily stigma linked to treatment-related appearance changes, invisible-symptom stigma that demanded ongoing credibility work, institutional stigma in employment, and gendered stigma in intimacy and motherhood. Participants responded through concealment, selective disclosure, and narrative labor: the work of presenting themselves as credible, responsible, and morally worthy despite social devaluation. These findings suggest that SLE stigma is not only interpersonal but also institutional and gendered, highlighting the need for stigma-sensitive clinical communication, workplace support, and reproductive counseling for women living with chronic illness.