Navigating College with Epilepsy

I was diagnosed with focal epilepsy when I was a toddler. I was blessed with access to amazing doctors and medication that carried me up until the end of high school. Seizures began to happen again, and the medication I was taking was no longer effective. What is unique about my case is that the seizures only happened at night, making it difficult for us to provide my doctor with a confident answer about when and how many seizures I was having. Testing new medications and adjusting the doses became the focus, yet nothing seemed to work. Withdrawals began to take over, which, as a young woman, was extremely hard to digest. As a new college student, I was overwhelmed knowing that my college experience was different than the one I aspired to have.

When I moved from New York to Boston for college, I met a doctor at the hospital who recommended surgery as the next step. This included an invasive EEG where I was bedridden for a week, directly followed by a laser ablation where they removed the part of my brain believed to be the source of my seizures. All my hair on the left side of my head was shaved, but there were positive signs that the surgery was effective. However, after doing an exterior-surface EEG, there were signs that the seizures continued. 

The following summer, my doctors, family, and I decided to do another laser ablation. Recovery was intense and included brain fog as well as the inability to fully communicate, develop complete thoughts, recall memories, or drive. As a junior in college, I was forced to pause my internship, which played a major role in my future career. 

The lifestyle that I expected to live as a young college student was compromised. My roommates were forced to see a different side of me; I was unable to participate in collegiate activities, and I no longer felt the proud sense of independence that young adults typically develop. That which I aspired to have was not that which I achieved. Constantly surrounded by college pressures, I was unable to emotionally manage my epilepsy and change my lifestyle to meet my personal needs. Social demands became a priority, while my personal health became second. The psychological pain I felt when the first two surgeries were unsuccessful took over, where something as simple as driving was not possible for me. My self-consciousness and lack of confidence hit a peak.

I am blessed to say that, as of right now, a third surgery was successful. I am currently weaning off one of my medications and finally achieving the young adult lifestyle that, for an extended period, wasn’t possible for me. While the third surgery allowed me to physically overcome epilepsy, true healing took place following college when I developed a sense of pride in being able to make it through such a mentally trying moment in my life. Being in college at the time and attempting to develop a sense of independence is what amplified the pain. My family, as well as access to medication and doctors, are the true source of how I overcame a difficult phase in my life.

For all young adults and college students who have overcome this difficult moment in their lives, you have the right to consider that time to be a time of trauma. That said, do not abolish it from your memory and disassociate yourself from it. For me, epilepsy is a part of my identity and something that I must carry with pride. In retrospect, to have physically and mentally overcome this challenge translates into pride and self-respect. I have used this as fuel to share my story with the hope that it helps validate what others in this community are going through. I am proud to have overcome this trauma, and my goal is to share this perspective with others.

Medicine is critical for those fighting epilepsy, but the story does not end there. As a young woman forced to face this challenge, I craved validation. I had so much support from family, doctors, and friends, yet they were often outsiders in my battle. College pressures were so strong that they blurred my perspective on what I must prioritize, my health, and that led me to feel shame and guilt. In truth, realizing this earlier may have helped in my journey. Reading other individuals’ stories about their journeys with epilepsy inspired me to share mine. By sharing my experiences, I hope to help lessen the shame that often comes with epilepsy.