Living with Epilepsy : A young perspective
View(s):The Mirror delves into the subject through the eyes of a youngster for whom it is a familiar part of life
Sharmila* was diagnosed with epilepsy in 2005, when she was 9 years old. She has been living with Epilepsy for more than a decade now, and as Epilepsy Week is observed globally during the last week of May, she recounts her story.
“My epilepsy was brought on by an infection, through a case of Japanese Encephalitis.” she said. “And although life is pretty normal most of the time, I’ve been affected long term.”
Sharmila says that while she’s always been able to do the things she loves, she has had to take a range of medications daily since that first diagnosis all those years ago. “While it has grown to be routine, it’s been a small but key part of my life over the years.”
The hardest part about epilepsy, for her, is the uncertainty. “My whole family had to live with that fear. Every time I was out somewhere they would be on edge wondering if I’d end up in hospital. Every time I was out with friends, at school, at a party, or in public, I had to live with the constant worry in my head wondering if I would collapse in front of all these people or if I could make another day till I went home.” she recalls.
Regarding awareness on the subject she says most people weren’t aware of what Epilepsy was or what it means. “Sometimes when I tell people I have epilepsy, they have no idea what I mean, so I explain it to them, or I just Google it and show them.”
Interestingly, Sri Lanka does have the International Bureau for Epilepsy to spread awareness about the subject in general. However, it seems most citizens, and the youth in particular, still remain unaware. “It would be great if there was an organization solely for young people with epilepsy to inform and connect people,” suggests Sharmila, noting that there wasn’t one in the country in the past.
However, Sharmila also notes that she has never been discriminated against or bullied due to being diagnosed with epilepsy.
“Part of it is that only the people who are closest to me know about my condition,” she notes. “But when I use to get seizures in school, or now at work, my classmates and friends were all very caring and very helpful.” Looking to the future, Sharmila is hopeful. She notices that a lot more people are aware about mental health these days than it used to be just a few years before. She is hopeful that the outlook towards epilepsy could change in future.
*name changed for privacy.