Living with Epilepsy: My Journey of Resilience

Epilepsy is more than a medical condition. It tests your limits, reshapes your priorities, and ultimately teaches resilience. You become adaptable. My journey with epilepsy has been a journey marked by moments of the unknown, triumphs, and profound self-discovery.

My first seizure

My first seizure caught me completely off guard as a child. I was at school, heading to the snack line. Then everything went black. I woke up in the hospital hours later with my family around me.

That day, I was told I had my first seizure. I did not have another seizure for a year.

Diagnosed With Epilepsy

After a year of being seizure-free, I had another seizure. I went into status epilepticus. Because of that episode, I was diagnosed with epilepsy. At the age of 10, I did not understand what that meant for me.

All I knew was that now I had to take medication and give my teachers a doctor’s excuse.

Adjusting to epilepsy medication

As a child and as an adult, I have tried a lot of different medications. Adjusting to medication was one of the hardest parts of my journey. When I was a child, I vividly recall not taking my medication.

I thought I wasn’t normal because I had to take medication. The side effects were hard to accept as a child.

There was a medication that I was on as a child that caused horrible side effects. It caused extreme dental issues. As a child going through puberty, I had a limit to the side effects.

I found the perfect combination in high school. It was phenobarbital and zonogram. I’m still on it today.

I found a dosage that worked, but it required listening to my body and advocating for myself with healthcare professionals. That experience taught me that managing epilepsy is not just about compliance; it’s about partnership and self-awareness.

Despite the challenges

Living with epilepsy also means navigating its social, romantic, and professional relationships. Once, during a professional meeting, I experienced an aura. I decided to excuse myself because I did not want to have a seizure at work. Eventually, the aura left.

Sharing my condition at work has always felt a little taboo for me. Some companies have been welcoming, and others have not. It depends on the company.

I know I have to remove the stigma and challenges from these conversations.

Despite the challenges, epilepsy has also shaped my passion and journey. Founding the Saving Grace Epilepsy Foundation was a way to turn my struggle into strength.

I remember meeting three women at Essence this year. We shared stories with each other.

Moments like these remind me why I fight so hard—not just for myself but for others who face similar battles.

What I have learned

Epilepsy has taught me adaptability and truly being resilient. Epilepsy is a condition that doesn’t define me but has become a part of my story.

Every seizure, medication adjustment, and moment of doubt has shaped me into the person I am today. I am a fighter and advocate, and I am an epilepsy survivor.