eyond the Diagnosis: Stigma, Pain, and the Social Life of Sickle Cell Disease – An Ethnographic Study

Abstract (English)

This paper examines the role of stigma in shaping the pain experiences of individuals with Sickle Cell Disease (SCD) in Udaipur, Rajasthan. Based on a week-long ethnographic fieldwork at RNT Medical College—recognized as a center of excellence for SCD—and in-depth interviews with patients and caregivers, the study uncovers the cultural and institutional forces that frame illness narratives. The research highlights how SCD-related pain is often marginalized through caste, identity, and gender, and frequently dismissed by local healthcare providers. Internalized stigma exacerbates self-isolation, anxiety, and poor healthcare-seeking behavior. However, individuals actively navigate these challenges, employing strategies to assert their experiences within these constrained systems.
By situating pain within broader structures of inequality and recognition, the paper contributes to anthropological discussions on the social life of illness. It calls for a reframing of SCD that goes beyond biomedical definitions, emphasizing the influence of cultural logics, institutional dynamics, and power relations in determining the visibility—or erasure—of pain in both medical and social contexts.