You Are Stronger Than You Know

I’ve been living with epilepsy since I was 16, and I’m 23 now. My seizures are caused by a rare brain condition called bilateral gray matter heterotopia. It means that some of my brain cells didn’t travel to the right place during development and instead ended up in clusters deep within my brain, where they aren’t supposed to be. Like many others with this condition, I didn’t find out I had it until I had an MRI after my first seizure. The diagnosis helped explain what was happening in my brain, but it also came with a lot of uncertainty. These misplaced cells impact normal brain activity and trigger seizures of all intensities. 

I struggle with two types of generalized onset seizures, tonic-clonic and absence seizures. Sometimes they begin with a strange sensation or moment of confusion, and at other times, they come on without warning at all. My epilepsy doesn’t always follow a predictable pattern either. This makes it difficult to fully manage. I’ve gone through different medications and tests over the years, and while treatment helps, it doesn’t take it all away. Living with this type of epilepsy has required me to stay hyper-aware of my body and surroundings every single day.

One of the hardest parts of living with epilepsy has been the loss of independence, especially not being able to drive. Transportation isn’t something most people think about until it becomes a daily barrier, and for me, that barrier is always there. Planning around rides, missing out on things, or depending on others can take a toll, emotionally and logistically. Another challenge is how invisible epilepsy can be. People don’t always see what you’re dealing with unless you’re in the middle of a seizure, and that invisibility can lead to an unbelievable lack of understanding. What’s helped me most has been learning how to advocate for myself with my doctors, jobs, and even the people close to me. I’ve had to speak up about my needs, set boundaries, and accept help when I need it. It hasn’t been easy, but I’ve grown stronger through the process.

I wanted to share my story because epilepsy is still so misunderstood, and people don’t talk about it enough. Before my diagnosis, I barely knew anything about seizures. Even after that, I felt like I was navigating everything alone. To this day, I learn things about epilepsy every day. This silence around it can make you feel invisible, like you’re the only one going through everything. I’m sharing my experience to help break that silence. I want others to know they’re not alone, and I want people outside the epilepsy community to understand what it’s really like. If my story can help even one person feel seen, supported, or more confident in speaking up about their own journey, then it’s worth it. Advocacy starts with honesty, and I’m ready to be part of that.

I’ve participated in Epilepsy Foundation Walks, and they’ve had a big impact on me. Being part of those events helped me feel less alone for the first time in. I was surrounded by people who truly understood what living with epilepsy means. It gave me a sense of community and reminded me that I’m part of something bigger. The walks also gave me a chance to talk to others about epilepsy in a way that felt supported and empowering. Through the Epilepsy Foundation, I’ve learned how to better explain my condition to others and advocate for more awareness. It’s not just a walk. In my eyes, it’s a space where you can feel seen, understood, and inspired.

To anyone living with epilepsy: I see you. I know how heavy and isolating it can feel, but I promise you are not alone. This condition might shape how we live, but it doesn’t define who we are. You’re allowed to struggle, but don’t forget that you’re also allowed to dream, to grow, and to fight for the life you deserve. There is strength in just making it through each day. Keep going! Even when it’s hard and when it feels like no one understands. You are stronger than you know - now and forever!