Club purple!

Growing up with epilepsy can be very difficult, especially with the stigma around the word seizure. Being able to talk about a diagnosis can be complicated since people who don’t understand it might treat you differently. I wanted to change this for the kids who attend my school and myself.

I wouldn’t call myself a person who is confident in my diagnosis. I try to stray away from the subject whenever I can, but when I can’t, I will probably appear very uncomfortable when talking about it. It’s an embarrassing feeling and causes trouble when I try to advocate for myself. I would never want anybody else with epilepsy to have to feel that way when they are just trying to exist. I decided to start Club Purple, an epilepsy awareness club, to teach people that people with epilepsy are just as capable as anybody else.

To be honest, running this club is much more difficult than I thought. To my surprise, over 50 kids ended up joining, which makes it the biggest club at my school. Not only is balancing cheer, academics, and this club a huge task when it comes to keeping the club going, but I didn’t realize what else I signed up for.

Starting this club was basically making an announcement that I have epilepsy. Kids in my school started to approach me with weird and uncomfortable questions. I don’t think some were trying to be rude or disrespectful. They just never had a person to ask. I understand this to an extent but getting over the “epilepsy girl” title was a challenge. At the end of the day, I realized: who cares?. Like yes, I am the epilepsy girl; who are you? I’ve achieved so much even though I have epilepsy, and I’m proud of myself!

What makes me happy that I started this club is when I hear about the people I’ve inspired. The kids who want to come to my school because they know they will be accepted for who they are. It makes me proud to see the kids that know how to react when somebody has a seizure making it safer and less embarrassing for everybody involved.

I couldn’t do any of this without my best friend. To say my club would be a disaster without her would be an understatement. She has been by my side since I brought up the idea and has helped me when I’m scared to do something. She understands how I feel but never lets it hold me back.

I know I have not deleted the stigma of epilepsy from my high school, but I think I’ve done a pretty good job. I hope when people read this, they understand the reality of being a teen with epilepsy and try to make a change. Small steps truly do make the biggest difference!!!

That’s it for now!

Sofi :)