Understanding the Role of Stigma and Misconceptions in the Experience of Epilepsy in India: Findings From a Mixed-Methods Study

Abstract

It is surprising that although 12 million people in India suffer from epilepsy this remains a thoroughly under-researched area in the sociology of health and practice. We address this intellectual and policy neglect by reviewing the social, psychological and legal challenges governing the lives of people living with epilepsy (PWE) by paying particular attention to negotiations in arranged marriages and employment. Drawing on the analytical frameworks of the sociological study of stigma, critical race theory and paying attention to the cultural models of health and suffering, this study utilized a combination of (online) survey data (N = 100) and in-depth qualitative interviews (N = 10) with PWE and their families. The online survey was administered to map the level of awareness about epilepsy and its clinical management among the general population, whereas the in-depth interviews were conducted to understand the experience, self-perception and everyday struggles of those diagnosed with the condition. Findings from the survey on non-PWE suggest a general lack of awareness and fearful misconceptions around epilepsy related seizures. In-depth interviews with PWEs revealed concealment (of the illness) as a dominant coping strategy to attenuate the social alienation and rejection associated with epilepsy. Further, PWE participants reported persistent discrimination, harassment and prejudiced understanding of diminished cognitive capacities at workplaces as a result of cultural myths and popular representations of epilepsy-related seizures. The study also demonstrated the significance of institutional support groups in assisting PWE to cope with symbolic violence and forge solidarities. We conclude with reflections on the ethical dilemmas faced by medical practitioners while dealing with social-medical interventions of epilepsy treatment. Overall, results from this study undergird the significance to revisit the social-moral as well as legal frameworks that persistently restrict opportunities for PWE in India. In an attempt to reimagine inclusive futures regardless of disease, disability and affliction, we attempt to move beyond the biomedical gaze and instead privilege stories of individual personhood, struggles and aspirations.

Health-related quality of life in children with epilepsy: a concept analysis

“…When people with epilepsy feel accepted in society, they make efforts to integrate epilepsy into their lives and display a more positive attitude toward life [52]. However, social stigma against a certain group can make them unable to accept themselves, putting their behaviors under the control of society [53]. In particular, social stigma experienced in childhood, when self-identity is not fully established, can act as a risk factor for children with epilepsy to form a negative self-concept and perceive life as unhappy [30,35,37,42,51,[54][55][56].…”

Perception of the general population on Epilepsy and Antiepileptic drugs: A questionnaire-based study

“…According to published data, urban dwellers have better knowledge and attitudes than rural residents 37,38 .Due to our study duration, geographical constraints, and sampling technique, most of our survey participants belong to urban regions, which might contribute to sample bias and increased levels of KAP. Even though the majority of our people were urban educated, there was still a large gap between KAP, consistent with few works 8,12,38 .…”

A Survey on Epilepsy and Work: Profiles and Challenges

“…Strine et al 17 reported that PWE had higher levels of unemployment, pain, hypersomnia, insomnia, psychological distress, and insufficient leisure time. An Indian study by Gosain and Samanta 18 revealed that at workplaces, epilepsy is often perceived as being a condition that interferes with cognitive capacities and that the quality of work of PWE is impacted by reactions from their colleagues who witness seizures.…”