1 in 26: My Journey With Epilepsy

When I was 7, I moved to a small village in North Yorkshire, UK. As the new kid, I was often bullied. A few months later, an older child hit me on the back of the head with a large wooden log, causing head trauma. Two weeks after that, I had my first seizure, and I was diagnosed with generalized tonic/myoclonic epilepsy. Doctors linked the head injury to the onset of my epilepsy.

I was lucky to have parents in the medical field who were supportive and made life easier. After years of bullying, I eventually found the right people to call friends. At 19, I moved out with one of my best friends, though by then, my seizures were still frequent. I didn’t want my epilepsy to stop me from living a normal life. Now, at 28, I have a career with a bright future, but it’s taken years of challenging jobs and battling depression to get here. There were times I questioned if I should just give up, seek government assistance, and let epilepsy defeat me.

Living with seizures has been a relentless battle for over 20 years. I’m still trying to find what works for me. In my early teens, I had a couple of seizure-free years, but as I’ve gotten older, the seizures have returned, typically every two to three months. I’m still searching for something that will help keep them under control. Thanks to my supportive parents and my persistence, I’ve reached a point where I’m happy with my life. I’d love to never have a seizure again, but that’s not my reality right now.

No matter how different you may feel compared to others, remember the battles you’ve fought that they haven’t. Sleepless nights, paranoia, feeling broken after seizures, memory loss, and the potential side effects of the medications we take—yet we’re resilient.

I enjoy reading other people’s stories, so I wanted to share mine. In 28 years, I’ve met just one other person with epilepsy. Reading about other people's experiences makes me feel less alone. Even though 1 in 26 people have epilepsy, it often feels like 1 in 1,000 when reading shared stories. It’s been a lonely journey, but hearing from others helps me feel connected. Never give up!