I became "1 in 26" when I was diagnosed at age 20 with epilepsy. I never had seizures growing up, so this diagnosis came as a shock. I felt an immense amount of confusion and fear about my future. For a long time, I was worried that sharing my diagnosis could stigmatize me as many people don’t understand what an epilepsy diagnosis entails. My biggest challenge was accepting myself. I worried about how I would be perceived as an adult developing epilepsy. I didn't want to have to explain why I couldn't drive or why I was tired more than I used to be. I wanted to be "normal" and not have these limitations. Through the support of my family, friends, and neurologist, I overcame these fears. I learned to accept my diagnosis by reading more stories like mine and realizing that there was a whole community of support out there.
Ultimately, I had to accept that sometimes there isn’t a specific cause and epilepsy can affect anyone at any time. I am sharing my story because epilepsy as an adult isn’t something to be afraid of or to face alone. It is something to fight against with others. Today, I work as a writer and producer, with many of my creative stories focused on characters understanding, accepting, and growing stronger from their epilepsy diagnosis. Sharing these stories helps limit the fear others may have when newly diagnosed and helps everyone understand what it means to have epilepsy.
The most important thing to remember is that you will get through the challenges and tough days. You are not strange or different because of your diagnosis. You are strong for fighting it every day.
