Social transfigurations, gender, and imagined wellness: a qualitative case study of erythema nodosum leprosum in Indonesia and India

Introduction Leprosy reactions are immunological complications that may occur before, during, or after completion of multi-drug therapy. Erythema nodosum leprosum (ENL), or type-2 reactions, are painful and characterised by fever, skin nodules, and involvement of organs such as joints and eyes. Social transfigurations in health refer to an exploratory lens to describe the profound changes in social identity and status due to illness. Social transfiguration in leprosy is often associated with negative social attitudes, stereotyping, and discrimination, leading to social isolation. Results Examining the lived experiences of an Indonesian man and an Indian woman illustrates the realities of physical transformations due to illness, whereby the embodiment of ENL and concurrent social relationships can reproduce and reinforce an imagined wellness that may be unattainable. The unpredictable occurrence of ENL can delay care-seeking, increase stigma, and disrupt familial and social connections. The embodied, gendered and temporal dimensions of the transfigured body also draw attention to the cultural and social norms that render the body an (in)disposable contributor to the household. Conclusion This paper highlights how ENL is related to bodily life through the lens of sociality and its transfiguration on health and illness. Service providers mindful of affected individuals’ unique experiences could consider the implementation of structural changes in ENL care, such as inpatient support, self-care groups, and integrating social support, which might improve the lived experience of affected individuals.