Speaking up About Epilepsy

I had my first seizure on a bus coming back from church camp and another on the way to school about two weeks later. Immediately, my parents started the search for a neurologist. Nobody in my family ever had seizures or any neurological disorder, so this was all new territory for them. The next couple of years included numerous EEGs, exploring medications, and looking for answers. My diagnosis is juvenile myoclonic epilepsy. Now, almost 15 years later, there has not been a clear answer to what causes my seizures. The only thing that changed before I began having seizures was, I started on acne medication. Once I was diagnosed, my parents decided it was best to discontinue the medication. I was angry and devastated as it was just beginning to work for me, but I knew my parents were only looking out for me.

Over the years, I had multiple seizures, and it was even harder because I would go months without having a seizure, and then I would be right back where I started. I was depressed, lonely, and felt like a burden to everyone in my life, even though deep down I knew that wasn’t true. 

I was seizure-free for almost two years and ready to begin my freshman year in college when a seizure in April 2016 dealt a huge blow to my mental health. I felt like everything was falling apart. Losing the ability to drive has been one of the things I have struggled with most when it comes to epilepsy. I knew I wouldn't be able to take my car to college and would have to rely on other people to take me places. I feared I would be a burden to those around me and I questioned if going to college was even a good decision. I had overwhelming support as a college student. My sorority sisters and roommates would do anything to help me and expressed how much they cared about my health. I taught them, along with many others along the way, about seizure first aid. 

Photosensitivity is a trigger for my seizures, so I have had to step away from many things I love. I have not been able to attend concerts because of flashing lights. I love music and all I wanted was to have fun with my friends and see my favorite artists. Since I have been seizure-free for a while, I have adapted, but I still put my well-being first. I only go to concerts at amphitheaters, so the lights are not as intense, and I always wear wraparound sunglasses in case it becomes too much for me. 

I was seizure-free for seven years until I had two seizures within a month of each other in 2023. This was a catalyst for me to embrace my diagnosis and move on stronger than ever. I completed my bachelor’s degree at Missouri State University in three and a half years. I will be pursuing a master’s degree in library science this fall. Continuing my education has given me a sense of purpose and my epilepsy has only made me stronger. I have been seizure-free since January 2024. I work in the legal field and spend my free time volunteering and attending young adult groups at a local church. 

I always say, "I have epilepsy, but epilepsy does not have me." For many years, I was insecure about having epilepsy. I knew that I had to put those feelings aside and use my experience to better my life and speak up about epilepsy, so I competed in a pageant in April and was crowned Miss Missouri Worldwide. I decided to make my platform epilepsy awareness. I have shared my story on social media and started my outreach, and I have been met with overwhelming support. People thank me for educating them on epilepsy and I continue to teach others about the importance of seizure first aid. Storytelling is an important part of awareness, and I am finally not afraid of what people will think when I talk about my epilepsy. I will compete for the title of Miss Worldwide in August and continue my advocacy for a better future for those with epilepsy. I will also be running the Seize the Day 5K in St Louis on August 17. I love exercise and it has helped me tremendously in dealing with my epilepsy. It has increased my confidence and the better I feel, the less I tend to worry about having a breakthrough seizure. 

You are so much more than your diagnosis. Do not let the stigma of epilepsy prevent you from chasing a dream. Epilepsy does not define you. You are worthy, capable, and strong. Keep pushing, take care of yourself, and never stop advocating for what is best for you.