How I Dealt With a Teenage Epilepsy Diagnosis
My seizures have forced me out of school and required surgery. I’m trying to find the right path now.
On October 11, 2014, I had my first seizure. Like every Sunday, I was on the way to my dance class, which required a drive to the train station. At 14 years old, my whole life would soon change, and I didn’t even know it yet. While waiting for my train to arrive, I suddenly fell into my first ever tonic-clonic seizure and hit my head on a metal pole. The seizure lasted for about two minutes, and when I opened my eyes, I didn’t have a clue what had just happened. I was lying on the floor, looking up at strangers. The paramedic asked me if I was OK, but I couldn’t respond. I don’t remember much from that day; however, my mom told me it took about 20 minutes for me to come around. Before I knew it, I was being lifted into an ambulance. I was tired and scared and didn’t know what had just happened to me. The hospital staff kept me overnight because of my severe head bump and because I had just experienced my first seizure.
If you had asked me what epilepsy was when I was 14 or younger, I would have told you it was some sort of illness that makes people have seizures when they look at flashing lights. Little did I know that there is so much more to it. I wish more people knew this.
Epilepsy is a hidden disability where sudden bursts of electrical activity in the brain cause different types of seizures. There are about a dozen types of epilepsy, which play a role in the type of seizure you have. The symptoms can involve uncontrollable jerking, collapsing, stiffening and other strange sensations in the body. Side effects often come more from epilepsy medication; however, there are a lot of restrictions that can come from being diagnosed with this disability. The main treatment is often medication, but there are other kinds of treatment such as brain surgery, the vagus nerve implant and going on the ketogenic diet. It is not proven that epilepsy can be cured; sometimes it runs in the family or it can be caused by a severe head injury.
I Was Diagnosed With Generalized Epilepsy
The next day, the doctor told me not to worry, that it was probably just a one-off seizure and to just keep an eye on it. But four days later, I experienced my first absence seizure, which is when you blank out and can stare into space for up to a few seconds or even a couple of days. This scared my mom a lot because even though my eyes were open, I wasn’t responding to her. After this, we knew something was wrong, but the doctors just kept telling me that it was my menstrual cycle or that I was just stressed out.
It wasn’t until October 2015 that I got diagnosed with generalized epilepsy. I didn’t really know much about it—my mom dealt with all the hospital and doctor’s appointments, and I just had seizures. Then I got put on my first medication, and I just remember thinking, “Thank God it's all going to be over.” Little did I know it would get ten times worse. I had no idea how much the side effects from the medication would affect my mental health—I experienced memory loss, blurred vision, difficulty processing information, and on top of all this, I had to deal with the life of a 16-year-old in high school.
I was feeling sorry for myself, and I blamed a lot of my problems on epilepsy. I would get upset and angry over the smallest of things and then have a seizure and have to go home. I missed a lot of school due to seizures, and I gave up quite easily. I didn’t push myself through the tough time I was having; hence the reason I failed most of my GCSEs.
I’ve Become an Advocate for Those Impacted by Seizures and Poor Mental Health
Going to dance college with no GCSE worried me. Some days, instead of going to school, I would get the bus into town to try and find a hospital that could help me. Nobody would listen. Hospitals told me to go home, and treatment centers told me I needed money. I felt lonely. I wanted to give up, so I took the easy route and decided that I didn’t want to carry on dancing. Quitting college was very out of the blue, and I had no idea what I was going to do. All I knew is that I wanted to be happy. I thought a few weeks off would be fine, then I’d get myself a job to earn some money and everything would be OK. I was very wrong. I got bored of doing nothing every day, and every employer kept turning me down. It was almost like no one wanted an epileptic girl working for them. I hit rock bottom, and I didn’t know what else to do.
Eventually, I started receiving counseling for my mental health, and my mom pushed for more doctor’s appointments. That led me to opt for vagus nerve stimulator surgery, which allows me to now feel when a seizure is coming on. My mom also got me to volunteer at a local dance school, which gave me something to do instead of feeling sorry for myself. I really enjoyed teaching little kids to dance, and my mom has now suggested I start an apprenticeship in child care.
I wouldn’t be where I am today if it were not for my friends and family. I am now a level 2 early years practitioner, and even though I was always so embarrassed by my epilepsy in high school, in my spare time, I spread awareness about those impacted by it. I’ve come to terms with the fact that I live with a hidden disability and I shouldn’t be embarrassed about it. During lockdown, I even started making TikToks about my crazy stories and answering people’s questions about epilepsy. My videos have gone somewhat viral, so I’ve decided to start an Instagram page. Now I’m doing whatever I can to raise money and awareness for both the epilepsy and mental health communities.