Not letting epilepsy become your identity

Two years ago, I was told I had epilepsy. For some reason, I seemed to have heard the words “you are epilepsy” because, for the longest time, I made it my personality trait. I firmly believed that I was nothing more than my diagnosis. Eventually, everyone knew me as the girl with epilepsy because that was all I gave myself credit for. The truth is, there is so much more to me than that. I just let epilepsy take control.

For months now, I have been working on separating myself from epilepsy. No- not in the way that sounds. As I said, it was my personality trait. I have made it my goal to see more in myself than just my diagnosis. It is more complicated than I thought. The best advice I was given was by a close friend of mine: epilepsy is a noun, not an adjective. I am more than just seizures and medications. I have talents, hobbies, friends, etc... Since taking on this mindset, I have been set free from the feeling of being “the sick girl.” I have learned to appreciate the things that make me unique and the things I am proud of myself for.

My progress on this path to finding myself took a huge turn back in October. I won the title of Miss Dallas Teen USA, and the press had an absolute field day. Since I am the first and only girl with a service dog to win a USA pageant, I was featured on news stations, newspapers, and magazines and even went viral on TikTok. This was great, but all of the headlines referred to me as a “girl with epilepsy.” I inevitably fell back into my old mindset of thinking I am epilepsy rather than I have it. Every time I have a seizure, see another article or even think about myself in that sense, I hear Amanda telling me her advice, “epilepsy is a noun, not an adjective.” I must remind myself that I am much more than my diagnosis, and I am capable of many things despite it.

As I move forward with my pageant training, I have been working with mental managers, pageant coaches of all sorts, and even mentors, all of whom have told me the same thing: I am not just epilepsy. I have been labeled time and time again “Teen with epilepsy and service dog” or “Pageant girl with epilepsy.” I have found the second part to each of these titles unnecessary. I am a pageant girl. I am a teen. Yeah, I might have epilepsy, but that does not define me.

Some of the ways I have learned not to let epilepsy define me is to write down a list of characteristics I have other than epilepsy. It seems stupid, feels stupid, and might even be stupid, but it works. This list reminds me that I am much more than my diagnosis. I also wrote this list with an expo marker on my bathroom mirror. Every morning I am forced to look at the list and remind myself that I am more than my diagnosis.

I want you to learn from my mistakes. Don’t let yourself fall down the rabbit hole and make your whole existence revolve around epilepsy. You are beautiful, capable, strong, and overall unique.

Much love,

Ali and Brady