Epilepsy Does Not Define You

I was first diagnosed with generalized epilepsy at 9 years old after I had three seizures. As a child, I didn’t understand what this meant aside from having to take medication every morning and night. Being in a military family, we moved to a different province in my teens. I had received a pediatric neurologist who had mentioned that I was one of the most depressed patients she had ever seen and that it was likely due to my medication that I wouldn’t need to be on because I would grow out of my epilepsy. From there, I was weaned off my medication and lived life as usual.

At 15, I was off my meds, working night shifts, and had chronic insomnia. One morning, I woke up to my pillow stained with blood and not remembering what happened at work that night. My neurologist reluctantly put me back on my medication. At 19, I was struggling with panic disorder. I had a therapist suggest that I connect with my neurologist again. When I returned to my pediatric neurologist, she told me that she did not believe I had epilepsy as I had not had a seizure in four years, but that I remained on the medication because I had a seizure in my sleep. 

I was referred to an adult neurologist and began the entire diagnostic process again. When I had my EEG, I was feeling optimistic about “growing out” of my epilepsy at some point. My neurologist’s resident then began assessing my daily life and asked, “Do you have any bodily twitches?” I said, “I do! I typically have them when I’m tired.” Little did I know that this would lead to a life-changing diagnosis of juvenile myoclonic epilepsy (JME). I didn’t even understand what it was let alone how we came to this diagnosis. As it turns out, I had been having absent seizures since my diagnosis at 9 years old. I was told I would never grow out of it, which shattered my world. I believed I would up until that point.

From my childhood until now, I have encountered many challenges on my journey, including bullying and teasing from peers. People often feel uncomfortable around things that scare them and when they feel this unease, people tend to joke around. While I didn't understand this as a kid, now that I am an adult, it has encouraged me to provide education to my peers about what epilepsy is and is not. I also have poor short-term memory, but incredible long-term memory. Putting myself through school was a struggle because I had to retrain my brain to study for tests and retain information to apply in the workplace. I overcame this through dedication, trial and error, and realizing not everything works for everyone.

Having epilepsy as an adult is heartbreaking and empowering at the same time. I was 23 years old, had my driver’s license, a job that I loved, and stable health. Due to my memory problems from seizures, I forgot to take my medication one morning and ended up having a tonic-clonic seizure in the evening. This then led to the suspension of my license which crushed me. I had lost my independence and feared losing my job due to a lack of transportation.

Thankfully, I had some amazing people in my life who helped me get to and from work until I was finally seizure-free long enough to get my license reinstated. Now, I’m 26 years old, and I have my master’s degree. I am a successful clinical therapist and an advocate for epilepsy and neurodivergence. The Epilepsy Foundation has allowed me to read other people's stories and feel like I'm not alone in the challenges that I experience. I want my story to be a source of inspiration and encouragement for someone else who might feel the same way. 

If I could send a message to anyone struggling with a diagnosis of epilepsy, it would be this: Don’t let others tell you that you can’t. People told me that I couldn’t, and I did. I believe you will make it through this. Receiving a diagnosis of epilepsy is life-changing and scary, but it gets less scary as you go. Epilepsy is a part of you, but it does not define who you are. You can still live a fulfilling life with epilepsy and achieve what you set your mind to.