Oli’s Story: Living with Epilepsy

Oli was diagnosed with epilepsy in second grade - before he fully understood what was happening, but old enough to feel its impact. Seizures in public left him feeling different, especially in middle school. Over time, with support from family, friends, and his care team, he built confidence, routine, and a strong sense of self. 

Read his full story below. 

When did it start to make sense?

I was diagnosed around second grade, but at first I didn’t really understand it. What I did understand was how much it scared people around me - I’d have seizures in public and at friends’ houses during sleepovers. It made me feel awkward, different, and pretty isolated, especially in middle school. It wasn’t until later in elementary school, when my mom helped explain things after neurologist visits, that it really started to make sense.

Read more: How to talk to children about epilepsy

What got you through the tough years?

Having structure helped a lot. I got really involved in martial arts, sports, and Boy Scouts. Being part of those communities gave me a sense of normalcy - I wasn’t “the kid with seizures,” I was just another person in the group. It also gave me confidence and a place where I felt accepted.

Learn more: Can students with epilepsy participate in sports?

How has epilepsy affected you physically?

As I’ve gotten older, I’ve felt the physical side of it more. I’ve had injuries from seizures - like hitting my head on counters or even breaking my nose recently. That’s made the reality of it more serious, but it’s also made me more aware of how important it is to manage it and stay safe.

What makes your support system work?

It really comes down to trust. I trust my friends and my neurologist completely. My friends know what to do if I have a seizure, and I feel safe around them. I know they wouldn’t put me in situations that could put me at risk, and they accept me fully. I also have a neurologist now who really understands me and my schedule, which makes a big difference.  My current neurologist was recommended to me, which helped a lot.

Learn more: What is an epileptologist? 

How do you manage your epilepsy day to day?

I’ve used tools like the Epsy app to remind me to take my medication, which helps me stay consistent. It also took a bit of trial and error - I went through about two to three medications before finding what worked best for me.

Read more: 7 most common anti-seizure medications

What advice would you give someone newly diagnosed?

Don’t stress too much. It’s a big diagnosis, but it’s manageable. It does take time to adjust and it can shift your perspective, but finding your identity - things like athletics or music for me - makes a big difference. Being happy and finding what grounds you is really important.

What do people get wrong about epilepsy?

That it has to limit your life. A lot of people with epilepsy can live independently - we can drive, work, and support ourselves. It just takes being mindful of your health and making smart choices. For me, I don’t let epilepsy stop me from living my life.

Share your story

If you would like to share your epilepsy story with our team, contact us on contact@epsyhealth.com.