Overcoming the stigma from my childhood

I grew up in a traditional culture in India. My journey with epilepsy began when I was 7 months old when I fell from the bed. This fall led to an injury in my brain. As a child, I was a healthy and an excellent student, but for fractions of seconds, I lost consciousness. My mother would consult different doctors. At times she would also follow recommendations to visit faith healers. To me, my seizures felt like losing consciousness for a fraction of a second, but to society, it was some sort of an evil spirit.

At school I remember my friends telling me that I was possessed by a demon or that someone had done black magic to me. About 12 years ago, epilepsy was such a new term in India that when my neurologist found a diagnosis for my condition, my school would not agree to give me disability accommodation.

Epilepsy had very negative impact during my childhood due to the stigma. One time a classmate even asked me to commit suicide. The principal of my school was also not convinced that I had epilepsy and said that I was acting out. She would also shame my mother for giving birth to me as nothing could be done for my condition.

My overall experience of growing up with epilepsy in India was bizarre. Ten years after my brain surgery, I am seizure-free and do not take medication. But I am still affected by stigma because I am often discouraged to talk about having had epilepsy.

Being resilient and educating others about epilepsy was something that helped me to cope with stigma. This made me pursue a career as a neuropsychologist. In a nutshell, a disability in India is like a scar. I have recovered, but it leaves a scar for the rest of your life. It is so interesting that in a country where I was raised for 18 years, I actually did not have any friends. My overall experience with stigma had left me with really bad anxiety.

I wanted to give a new direction to my life after my treatment. As a result, I left for the United States after finishing my treatment to pursue a Bachelor’s degree and later earned a master’s degree from Kingston University, London. As a mental health professional, working and connecting with others with epilepsy has helped me overcome my anxiety. Furthermore, when I got involved with Epilepsy Action, and the Epilepsy Society in the UK it helped me to inspire others and eliminate stigma. My epilepsy taught me to stand up for myself and to never stop fighting for your aspirations.

Anky