Searching for Confidence as a Young Woman With an Invisible Disability

My epilepsy doesn’t define me, but I’d be lying if I didn’t admit that it played a significant role in dictating my social, romantic, and to some extent professional life from the day I had my first seizure, the August preceding my sophomore year, throughout the rest of my formative years. While I can confidently reassure everyone out there it does “get better,” I’ve only recently began to realize how the ramifications and insecurities that came saddled on the back of my disability continue to have complex, ripple effects on my life today.

Anyone that knows me will tell you that I’m a Type-A girl who likes a plan. Even as a toddler, each night would end with the pesky question “What are we going to be doing tomorrow?” Similarly, since elementary school, I’d had aspirations to go to a top-tier school, nonchalantly replying to the question “What do you want to be when you grow up” with “I’m going to go to Harvard.” I’d 100 percent bought into the “you can do anything you set your mind to” doctrine. Thus, it’s no surprise that I placed a heavy amount of pressure on myself to keep up my grades even as I struggled to find a medication to halt or at least slow down the near constant onset of seizure symptoms I faced.

Other relevant stories:
• What Does a Seizure Feel Like
• Epilepsy Life Expectancy
• How Many Hours Should a Person with Epilepsy Sleep 

By the time Friday rolled around, I was physically and mentally exhausted. It was as though I’d been gifted all the “day after” effects of the kind of outrageous benders depicted in pop culture as the teenage norm, without any of the actual fun. While the majority of my peers were out drinking and “hooking up” with each other at the house of whomever’s parents were away for the weekend, I was grateful if I could get through a couple of episodes of “Veronica Mars” with my best friend from elementary school. In my four years of high school, I never once had a boyfriend. I never got my license. I was never asked to a dance. I formed many a fledgling friendship without ever really getting too close to anyone. In short, I didn’t fit neatly into any of my school’s boxes or social spheres.

My epilepsy was pretty much public knowledge, mainly because it had forced me to switch identities and friend-groups, going from varsity cross-country runner to sub-par thespian overnight, and for the most part everyone, students and faculty alike, was supportive. Still, the shame and frustration I felt around my disability often prevailed over all logic. When I had my first public seizure at school, I cried more because my crush at the time was going to hear all about it than I did from the pain of bruising my leg and literally falling on the ground. I tried to deflect it all with humor, joking that waking up in the classroom was like being treated as “Sleeping Beauty.” But I brought in homemade cookies to that class the next day as a means of proving that I was OK and in control, that what they had witnessed didn’t make me a caricature out of “The Exorcist.”

To this day, as a student at Johns Hopkins University, I still struggle with the fear of rejection or humiliation and when to tell faculty, potential employers, friends, and guys about my epilepsy. Even at that, there is a wide gap between telling someone about your disability and reaching out for help, letting them into that part of your world. Just this past spring, I was out at a local club for a formal with my sorority sisters when the neon lighting, heat emanating off the crowded bodies, and blaring music left me feeling nauseous, my visual aura hitting me in waves. My date looked on with an expression of concern as I stopped dancing, pausing to debate my options. It was one thing to tell him that I had epilepsy, but to have him beside me while I was having seizure symptoms, half-worried I would involuntarily barf on his shoes? Even with all of his assurances, that was an entirely different story.

I was inspired to ponder the ways having epilepsy has impacted my ability to form close relationships with other people most recently after losing my friendship with the aforementioned person who had stood by me on many an otherwise lonesome high school Friday night. The immense sense of loss and loneliness that followed what essentially amount to a “friend breakup” only served to emphasize the small scale of my social life. It felt like a Jenga board had toppled to the ground when only one piece had been removed, taking with it my sense of connection and a decent portion of my happiness.

The first step for me was finally admitting that it completely, 100 percent sucked that my epilepsy disrupted my high school experience. Honestly, this amounted to a lot of tears and some time spent in the land of self-pity, where I rarely allow myself to traverse. Then came the time to take on some accountability, asking myself tough questions like why I struggled so much to form tight bonds with my peers and if the fear of rejection had made me shy away from vulnerable situations.

Now I’m on the path of angry determination, focused on being more open about my epilepsy, refusing to let it get in the way of my social and scholarly success, and advocating for myself and others dealing with invisible disabilities. I know that my true friends and the man of my dreams will be accepting of all of me, including my epilepsy. I just have to possess the confidence to let them.

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Thinkstock photo by Moodboard.