Epilepsy (sofi’s Version)
Since a lot of people are new here, I wanted to run it back and explain the origins of “Epilepsy (Sofi’s Version)” and my favorite slogan, “In My Epilepsy Awareness Era.” I know it might look like I’m just a girl who only listens to mainstream music like Taylor Swift… and honestly, that might be a little true. But these two little slogans actually have a much deeper meaning than me just being a Swiftie. And honestly, I’ve never really cared if people think my interests are “mainstream.” The things that help people feel less alone are the things that matter to me.
I started my account back during my sophomore year of high school. As many people know, in high school and even before then, I would never talk about having epilepsy. It was something I kept super secret, and honestly, even after I started my advocacy work, I still struggled to actually talk about my experiences. I think a lot of it was feeling like I never fit in. I wasn’t like the other kids in my high school, and I didn’t really fit in with any of the epilepsy support groups I was in. Music had always been something that made me feel like there was somebody out there who felt the same way I did, even if our situations didn’t exactly match, the feeling it brought did. For me, this singer was Taylor Swift! Obviously, Taylor Swift did not grow up having epilepsy or anything similiar but she has so many songs about loneliness, trying to fit in, and growing up. I also really admired how she would constantly switch her “eras”. She was always reinventing herself and showing people that they could be whatever they wanted to be. This is where I got my idea for “In My Epilepsy Awareness Era” . I wanted to start a new era in my life, and I wanted it to be one that I would be more open about epilepsy.
For Epilepsy (Sofi’s Version), I honestly just wanted to make my journey with epilepsy feel more real and connected to myself. I didn’t want to just be a page that posts fun facts about epilepsy, but a page that posts content that I would have loved to see as a young girl with epilepsy. Even now, my motivation for posting is trying to be the page I wish existed. I wish there was someone talking about things like going to college with epilepsy, or even something as niche as joining a sorority when you have epilepsy.
Sharing my life with epilepsy online is something I love, but it’s not always easy. Being open about such a personal part of your life takes a lot, especially when you’re also trying to keep things positive and encouraging for others. Some days I’m balancing school, advocacy, Project T.E.E.N., and everything else life throws at a 19-year-old, and it can feel like a lot. But I’ll always keep showing up here, because authenticity and community matter to me more than anything. More than anything, I want to be the girl other girls with epilepsy feel comfortable coming to. Growing up, I never really had someone like that, and honestly, I still don’t feel like I do sometimes. There wasn’t a page talking about the real life parts of this—school, college, friendships, relationships- and I’ve experienced it all. If I can be that person for someone else, that’s what makes all of this worth it.
Living with epilepsy has shaped so much of who I am, but it’s also taught me the importance of using my voice. This page is my way of doing that. It’s messy sometimes, it’s honest, and it’s very much (Sofi’s Version). If sharing my story helps even one other person feel understood, then every post, every story, and every “era” has been worth it.
xoxo ,
sofi <3
