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Taking Control of My Epilepsy

Updated on August 2, 2017

It was winter break of my sophomore year of college. I had just woken up after a night out with friends. I remember talking to my friend who had stayed the night and I started to feel fuzzy, however I just put it off as being tired and hungover. The next thing I knew, I was waking up in an ambulance and the EMT was telling me that I had a seizure. At first, we thought it was a one-time ordeal; a combination of lack of sleep, alcohol, and the antibiotic I had just finished that tended to cause seizures. I wasn’t too worried when they decided to take an MRI and conduct an 8-hour EEG. The only worry I had was the fact that I was not allowed to drive for 6 months. However, on January 5th 2017, I received the news that would change my life: I had epilepsy.

The moment I heard my diagnosis, I was scared that I would lose myself and everything I had worked so hard for. A million questions ran through my head: Would I ever get to drive again? How many seizures would I have after this point? Would I be able to live a “normal” life like I did before? I didn't know how to live life this way.

To say that the first couple of months after being diagnosed were rough would be an understatement. I had panic attacks often, I could barely pay attention in class, and I was not reacting well to my anti-seizure medication. I felt like a huge burden to my friends and family, since I couldn't drive and would always have to ask for rides. My energy levels and memory started to go decline. I even considered leaving school for a semester due to how hard it was adjusting to my new life. However, I was determined to regain my sense of independence that I felt had been taken from me.

After a couple of months, things were looking up for me. I changed my seizure medication, started going out with friends again, and ended the semester with great grades. My family and I even started to doubt that I even had epilepsy due to how great I was doing. However, after another EEG and 2 more seizures during the month of June, I realized that I had to start taking my diagnosis more seriously than before. I also realized that I couldn’t sit around and be a victim anymore.

I decided that to deal with my diagnosis, I had to stop only focusing on the bad things epilepsy had brought and start focusing on the good. Firstly, it has helped me learn to become more self-reliant. Taking care of myself has become one of the biggest priorities in my life, as I must make sure I don’t do anything that might cause another seizure, such as not getting enough sleep, drinking too much or getting too stressed. This has caused me to miss out on a lot of things, however I realize that I am doing it for my own health and safety. I have also become more resilient. Getting diagnosed with a long-term medical condition makes you feel like everything is going against you, however I have learned to stay strong in bad situations.

The months after my diagnosis I realized how much people, including myself, don’t know about epilepsy. 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime, yet it isn't talked about enough. Most people when they hear the word epilepsy think of strobe lights and someone having large convulsions. However, it is not just a "one size fits all" illness and affects many different people in many ways. Also, many people don't know how to care for a person during a seizure, and might end up hurting them instead of helping them. While I don't blame people for not knowing about a medical condition they don't have, I think knowing what to do during a seizure is extremely important. I used to fear telling people about my diagnosis, however I have now made it my goal to educate people and end the stigma surrounding it.

Living with epilepsy is HARD, however I don’t let it define who I am. I spent so many months rejecting my diagnosis and feeling like a victim, but I learned that it takes acceptance and resilience. Having a great support system has benefitted me so much throughout this entire process, and I cannot thank my family and friends enough for always being there for me through the good days and the bad. Though I am still learning to live with my diagnosis, and I still have my struggles every day, I am proud of myself for getting to the place I am at now. I have epilepsy; however, epilepsy does not have me.

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