Breaking the epilepsy Stigma

ACCORDING to some research institutions, epilepsy exists in two parallel worlds - one of scientific advancements and the other, a darker world of superstition and prejudice.

Monash University Malaysia researchers, Dr Mohd Farooq Shaikh, Dr Aiedah Khalek and Dr Tan Meng Yoe seem to concur with the idea that epilepsy is none more sacred or divine than any other disease. The three of them have teamed up to explore the possibility of engaging religious institutions to raise awareness and provide education. The overall aim of this project is to reduce the level of discrimination against affected individuals.

Dr Mohd Farooq, a neuroscientist, acknowledges that religion is culturally embedded in the lives of most Malaysians. Therefore, any information disseminated by religious leaders and institutions is prone to be accepted without question. Unfortunately, people can misconstrue these messages and stigmatise individuals who suffer from epilepsy or HIV.

Aiedah, an expert in Islamic religion and society study, feels this is a real community issue that must be addressed. She says, “Epilepsy is widely known as ‘sawan babi’, which translates to pig seizures in Bahasa Malaysia. The name itself imposes a negative connotation and labelling, which is part of the stigma. Some spontaneously imply epilepsy as demonic possession. They strongly believe it can only be treated using a religious approach. These beliefs and practices may deter the vulnerable group from seeking medical treatment.

“Based on previous studies and our observations in the community, we hypothetically believe that society in general has a significant level of trust in its religious institutions. These institutions could work together with health experts to shed light on this matter. It helps to know that nowadays, they are more open to educating society on many issues, including health,” she explains.

Dr Tan, who is an expert in communication and online religion, says that a commonality shared by the three researchers is that they each consider themselves religious individuals and recognise that spiritual leaders are very influential. “Even in topics of health and sickness, it’s possible that Malaysian communities trust their spiritual leaders much more than they trust medical experts. That is one of the things we are exploring. If proven true, the next step would be to see if it is more effective to use the existing platform of religious institutions to provide medical education and combat stigmatisation. “We are not trying to debunk religious rituals or beliefs. We are hoping to provide additional and accurate information to these institutions, leaders, and communities, empowering them with a broader scope of understanding of stigmatised diseases,” says Dr Tan.

This project recently received a research grant from Global Asia in the 21st Century in the university and is estimated to take a year to complete. The three researchers hope to use the data obtained to diffuse negative perception and infuse accurate information to both religious leaders and communities.

The team hopes that religious leaders will be provided with a basic understanding of various stigmatised diseases, to educate their congregations. With their respective fields of expertise, this collaboration has a singular goal - to create a paradigm shift and reduce or even eliminate any form of stigma on these patients.