Even When It Is Hard, Don’t Give up the Fight

I was diagnosed with epilepsy at 16 after having a seizure in the shower before school. I was taken to school because I missed the bus, and my grandpa knew something was off, but didn’t know what it was. The doctors thought my post-ictal state was a concussion, but I had not fallen. After an EEG, it was determined that I had epilepsy. 

My seizures were very well controlled until a few years ago when I started having them again. After a medicine change and 6 months off work, they were under control again. Then, in January of 2024, I started having uncontrolled seizures again, and another medication change did not have any impact. Since it was the fourth medication I tried, I was eligible to have a VNS device implanted. Once it reached therapeutic levels, my seizures have been fully under control again. I am more than 6 months seizure-free as of right now! 

It was challenging to go back and forth between having my seizures under control and not under control. I was off work for a good while each time the seizures came back, and I was more than ready to get back to the 'normal' swing of things. My experience financially strained my household as I am the sole provider. I'm blessed that my employer offers long-term disability and job security, which took some stress off. There was a threat that if the VNS was not successful, I would not be able to work or drive again. Thankfully, that is not the case, and I have resumed my normal activities and responsibilities.

 When I was first diagnosed, the Epilepsy Foundation provided crucial information that I did not know. It gave me in-depth knowledge of my condition and helped me understand what to expect and how many others go through similar things. I participated in my first Walk to End Epilepsy® this June, which was very exciting!

I want to advocate for epilepsy and for people who have it. It is a cause that is close to my heart. There is a lot of stigma and misinformation about epilepsy and seizures. It is easy to feel self-conscious about having epilepsy, but I want to help remove that stigma and empower people to speak about their own experiences.

Even when it is hard, don't give up the fight. Lean on the people you love and find a good support system, whether family, in-person support groups, or groups on social media. A combination of all three is the best. Hang in there and don't lose hope!