From Denial to Advocacy: My 20-Year Journey to Accepting Epilepsy

Sam, our Spanish Peer Support Lead, with her Grandma - before Sam was diagnosed.

The first time I had a seizure I didn’t realize it was a seizure. I didn’t even know what a seizure was until I was diagnosed with Epilepsy. Even after my diagnosis I didn’t understand what it meant. To be told you have a chronic illness and to understand that chronic illness are two very different things. That was the foundation that led me to live a double life for 20 years.

Whenever I speak about my first seizure I get emotional because I remember the fear I felt that day. You never really forget your first seizure, just like you never really forget your first love. It becomes a part of you whether it has a happy ending or not.

While in my 6th grade history class I became paralyzed. I couldn’t move my arms when I reached for the pencil on my desk. I couldn’t even stand or scream for help. I was sitting at my desk while the world around me continued. It was terrifying to experience that first seizure.

I still remember the tears that fell down my cheeks as I was screaming internally. I remember the stares from my classmates as I was wheeled out in a gurney. However, what I remember most was seeing my older brother cry as the doors to the ambulance close. I’ve never seen my brother cry before and my broken brain gave my brother his tears.

I felt responsible for making my family worry. As you live with Epilepsy those feelings of guilt become louder and louder until it is screaming, “You are a burden!” It is hard to ignore those feelings when you see your loved ones exhaustedly worrying about you. I just wanted to be a “normal” girl, no Epilepsy, no seizures.

One of Sam's hospital visits she has had to deal with due to her seizures.

That wasn’t my reality though. Every month like clockwork I had a tonic-clonic (grand-mal) seizure either a week before or a week after my menstrual cycle. It became so repetitive my mom started writing down in her composition book when I would have my seizures and when I would be on my menstrual cycle. My mom suspected that my menstrual cycle had something to do with my seizures no matter how hard my neurologist fought us on that theory. He said “Hormones could not cause Epilepsy.”

In spite of his refusal to acknowledge that my menstrual cycle may have something to do with my Epilepsy my mom fiercely fought him on it at every appointment. My mom was my first advocate. She fought for me even when I had no energy to fight for myself.

And over the last 24 years living with Epilepsy I had many moments feeling sorry for myself. My self-pity was so bad that I denied having Epilepsy for 20 years. I convinced myself that if I just ignored the fact that I have Epilepsy then I won’t have Epilepsy. I lived my life with the motto fake it until you make it.

The problem with that is you can’t ignore Epilepsy, it won’t let you. Epilepsy has a funny way of reminding you who’s really in charge even when you think you are doing so well controlling your seizures, it sneaks up as an unwanted reminder. No matter how hard I tried to portray myself as a “normal” girl, I wasn’t. I wasn’t like the girls in my school, focusing on boys, and grades. I was living with a chronic illness that demanded all my attention.

I worried about taking my medication on time, my weight being the right amount for my medication, having a seizure while at school or in public, about getting enough sleep and eating healthy. Epilepsy consumed my life to the point where I gave up. I stopped taking my medication even though I told my mom I was. However, my mom is smart. She counted my medication everyday just to make sure I was so instead I started flushing them down the toilet.

Since no medication controlled my seizures I didn’t see the point of taking them especially when the side effects sometimes felt worse than the actual seizure. The side effects lasted all day, every day. The seizure lasted a few minutes for a day and the recovery got me out of school. To me it was a no brainer not to take my medication and I figured without medication I can continue being a “normal” girl.

I was on a downward spiral that no one knew I was on. To my friends (a few that knew I had Epilepsy) and my family I was handling Epilepsy courageously with no limitations. Inside, I was screaming for help! The very people that were there for me and supported me no matter what, I lied to them. Behind closed doors, I was trying to manage my Epilepsy alone. I honestly didn’t want the help even though I was barely keeping my head above water. I thought if I could manage Epilepsy on my own without needing anyone’s help then I wasn’t a burden. I thought that’s what being independent meant. It was very lonely dealing with Epilepsy by myself and I did it for 20 years. That loneliness led to low self-esteem and a toxic relationship.

Sam accepting her journey!

Despite that I’ve come to realize that everyone needs help, even those without Epilepsy. That’s what a community is, people that help one another. As human beings we can’t survive without community. We are social creatures, so whether you have a chronic illness like Epilepsy or not we all need a community.

After 20 long stubborn and pity-filled years my older brother helped me accept my Epilepsy. Five years ago, after another rant in the group chat about how life with Epilepsy is unfair my older brother said, “Maybe that’s your calling, to figure out Epilepsy.” I don’t know what it was about that statement that made something inside me switch but I went from pitying myself to believing I can make a difference in the Epilepsy community. Maybe it was that my brother believed I could do something with my life despite having Epilepsy or maybe it was the encouragement I needed without the false promises of a cure. Whatever it was, I would not have been able to accept my Epilepsy without my brother.

It’s interesting that one sentence can be the defining factor to someone else’s life. At that moment I decided to stop feeling sorry for myself and help others like me. I started posting on social media as Figuring Out Epilepsy, in honor of my brother. I started a blog (that got shut down), a podcast, but most importantly I created a community on social media.

I took it upon myself to be the voice for the Epilepsy community because for years I couldn’t even say “I have Epilepsy,” and I never wanted others to feel as alone as I did. Not only do I have the privilege of being there for the Epilepsy community, I have the privilege of collaborating with others who are trying to make this world a better place for us like Young Adults with Epilepsy.

So no matter where you are in your Epilepsy journey, know that you are not alone!

From Associate's degree to Bachelor's degree!