Epilepsy: A Misunderstood Disorder in India
Namaste! I am assuming that if you’ve reached this page, you are either searching for answers or need an assurance that you are not alone when it comes to Epilepsy. Well, you are not.
My passions: Traveling
and exploring different cultures around the world
I love: Poetry and I sometimes I do pen them down on my blog “Feral Thoughts”6
I also love: Dancing
“Complications in your life starts within you. So, Zoom Out and look at this world from a different perspective rather than going into the intricacies which is not needed.”
I never knew about Epilepsy until I was being diagnosed and my neurologist was explaining the precautions I needed to take for my own Epilepsy. I was so shocked that my mind went blank. My family and I realized later that I’d always had Epilepsy but had never given much attention to what turned out to be the seizures. I used to freeze while talking, forget a lot of stuff while performing multiple tasks, and then ultimately end up feeling like a loser no matter how hard I tried.
People around me used to make fun of me all the time as I stood there: in the spotlight, frozen, trying to recollect something, or to locate the words in my brain about the story I was telling them or the presentation I was giving. Whatever the occasion, by the time that I’d come to, I knew that I’d screwed up. But I don’t blame the people for being mean either…
Culture & stigma
In India, unfortunately; neurological disorders are taboo. We don’t want to talk about it and people don’t acknowledge the sensitivity of the matter.
Believe me or not, I was one of those people who thought: “Epilepsy couldn’t happen to me!”. Like everyone else here, I was in denial. According to The Better India: almost one-sixth of the people with Epilepsy in the world live in India11.
Depression & Family
Despite the above figures, as a society we feel such a pressure that we think questions like “What would people think about me?” or “Now people going to think I’m a freak!”. Thoughts like this used to pop up all the time with me. Honestly, for the first few months after diagnosis, I went into a depression14. I used to have suicidal thoughts15, didn’t feel like eating anything and I simply used to sleep all day so that I didn’t have to face anyone. Having depression can feel like you’re in a black hole. You become self-consumed, wondering if you’ll ever be able to be yourself again.
But, my amazing family never stopped supporting me. My parents were pillars of strength to me: they took me out for walks (looking after me when I collapsed during seizures) and my elder sister was just like my own personal motivational speaker.
People used to taunt me and ask me why my face was covered in bruises (I actually had them all over my body), but my family educated these people regarding Epilepsy.
My family enabled me to come out of my shell and become comfortable with who I am.
I’ve chatted online to so many people from India who appear to be having seizures but are either too laid back to consult a doctor or too scared to have a diagnosis of Epilepsy – because that would make them one of (as they say): “one of the freaks”.
I am very happy to say that I have a new role as a GIS Analyst16! It took me a long time to get this role though because of the discrimination regarding my epilepsy. I’d attended umpteen job interviews and when upon being asked why I had a 1-year gap in my CV I would explain my Epilepsy to be the cause. Sadly, as soon as they heard the word “Epilepsy” they all rejected me. Just to be clear, I am a silver medalist of my batch and always remained a consistent performer with a GPA of more than 8/10 throughout my academic history. I am shocked to know, how so many people are simply terrified to hire a person with Epilepsy.
In global firms, I often came across the page where they ask for the health details of job applicants to make sure that they are a “disabled-friendly” company, but sadly in India; very few companies have that kind of approach, and let me point out it to all of you, whether a person with Epilepsy finds their condition disabling or not is very individual.
People need to be acquainted well with Epilepsy, especially in India. Because of the high rates of superstition and only mediocre levels of literacy, these kinds of neurological conditions go undiagnosed. People choose to believe that the person going through these symptoms is simply “possessed” with spirits and they try out some voodoo-make believe magic spells. Nonsense right? I think so too.
My point is that Epilepsy IS EPILEPSY. I still forget things such as dates, and usual daily routines like locking the door before going out of the house etc., but it doesn’t make a person a freak, possessed by spirits or have intellectual disability. It doesn’t mean that a person shouldn’t be considered to be recruited by a company. India needs to recognize this. I am proud of my country, but this ignorance and discrimination must stop. I know that most people with Epilepsy have been through a lot. But thankfully there are kind people like Torie Robinson20 who understand these situations and have motivated me to write my heart out about my experience. So, I would like to say: don’t back down now. Take one step at a time. Fall. Rise. Fly.
- Robert Frost22
1. Twitter: https://twitter.com/scarlettfierce
3. Wikipedia: https://en.wikipedia.org/wiki/India
4. Wikipedia: https://en.wikipedia.org/wiki/Geoinformatics
5. Epilepsy Sparks: https://www.epilepsysparks.com/epilepsy-learning/what-is-epilepsy
6. Feral Thoughts: https://feralthoughtsfoundation.wordpress.com/
8. Twitter: https://twitter.com/michelleobama
9. Chimamanda Adichie: https://www.chimamanda.com/
10. Beyoncé: https://www.beyonce.com/
12. Wikipedia: https://en.wikipedia.org/wiki/India
13. Google Maps: https://www.google.com/maps
16. GIS Geography: https://gisgeography.com/gis-analyst-job-profile/
17. Pixabay - Voodoo: https://pixabay.com/illustrations/skull-halloween-pattern-art-tattoo-605925/
18. Pixabay: https://pixabay.com/
19. Pixabay – ErikTheGreat: https://pixabay.com/users/erikthegreat-507753/
Epilepsy Sparks: https://www.epilepsysparks.com/torie-robinson
21. Poetry Foundation: https://www.poetryfoundation.org/poems/44272/the-road-not-taken
22. Poetry Foundation: https://www.poetryfoundation.org/poets/robert-frost
Having a supportive family means everything when we get our diagnosis and don't know how it will impact our future. I am glad you have found a job that makes good use of your academic brilliance. We all owe Torie a great debt of gratitude for spreading the word that epilepsy is neither a curse nor a single entity. Wishing you all the best in living a rich and full life with epilepsy.
A very interesting read, Sheetal, I see alot of comparison to my own life with Epilepsy & so many others with Epilepsy, Worldwide, your life & passion, Just as Torie Robinsons, are worth so much to us all, I have always found like my family so understand & Supportive, it's so important for us all.