Navigating College Life With Epilepsy

My journey with epilepsy began when I was seven, though I was initially misdiagnosed with vasovagal syncope. By the time I was nine, the fainting spells had become more frequent and were accompanied by tremors. After switching hospitals at age fourteen, I finally had an EEG that confirmed the epilepsy diagnosis. I was prescribed a low dose of seizure medicine, which seemed to work for a long time. However, when I started college at seventeen, my seizures returned with intensity. I began experiencing tonic-clonic seizures almost every month, leading to significant injuries.

Just when I thought all hope was lost, I was referred to an Epilepsy Center. The care I received there was transformative. The doctors and nurses have gone above and beyond to help me become seizure-free, trying different medications, conducting overnight sleep studies, and scheduling MRIs. Their dedication has given me a renewed sense of hope—I finally felt heard and understood. 

Living with epilepsy as a college student is both a challenge and a powerful learning experience. Juggling the demands of school, social life, and my health is no easy task, especially with the unpredictability of seizures. Navigating college with epilepsy means I can’t always live the "typical" college life. I must constantly be mindful of my health, getting enough sleep, managing stress, avoiding alcohol, and staying on top of my medication schedule. Through it all, I’ve learned how essential it is to advocate for myself because if I don’t, no one else will. I’ve had to work with professors to arrange accommodation and educate my friends and roommates on what to do in case I have a seizure.

One of my greatest struggles is not being able to live like the typical college student. I adhere to a strict routine to ensure I get enough sleep, avoid triggers, and manage stress. It’s tough watching my friends go out and have fun when I can't due to my photosensitivity and need for rest. I also can’t pull all-nighters when studying. To cope, I’ve found alternative ways to hang out with friends, like grabbing coffee, watching TV, or working out together. Another daily challenge is the aftermath of my injuries. My tonic-clonic seizures have left me with concussions, black eyes, chipped teeth, sprained ankles, and more. As a runner and swimmer, this is especially difficult since the pain can interfere with my training. To manage, I take rest days after a seizure and have made my apartment safer by covering sharp corners, ledges, and faucets—small adjustments that bring me peace of mind.

Living with epilepsy is undeniably tough, but it has shaped me in so many ways. I’ve had to confront challenges that many of my peers will never experience, and in doing so, I’ve become more compassionate, patient, and determined to find a seizure-free life. I’m incredibly grateful for the unwavering support of my friends, family, and professors, who have been understanding when I need to miss class due to a seizure.

I’ve decided to share my story because of the challenges I faced in obtaining an accurate epilepsy diagnosis and to raise awareness about the condition. For years, I felt isolated because epilepsy is an invisible disability. I know other people feel the same way, and I want to create a space to connect with them.

Through my journey, I’ve participated in several programs, events, and services hosted by the Epilepsy Foundation. The first event I attended after my diagnosis was an awareness event, and it was the first time I was in a room with others who understood my struggles. Hearing their stories made me realize that I am far from alone. The online support groups provided a platform to connect with people and share strategies for living with epilepsy.

To anyone living with epilepsy, I want to say this: your journey may be difficult, but you are incredibly strong to face it every day. It’s normal to feel frustrated and overwhelmed at times, but don’t forget how far you’ve come. Although it may feel like your health is out of your control, taking proactive steps like managing medication, avoiding triggers, and advocating for yourself will help you build resilience. Remember, it’s okay to ask for help from doctors, family, and friends—you are never a burden. Don’t let epilepsy hold you back from pursuing your dreams.