I was diagnosed with epilepsy when I was 14 years old. My seizures were non-convulsive, so I felt “lucky” that no one could knowingly see my seizures. With my non-convulsive seizures, I’d have a spasm but was fully awake and aware. I tried to hide it as long as possible. If someone saw me have a spasm in my arm and they’d ask if I was OK, I would lie and play it off as if I had a quick twitch. Playing it off as if I were OK has been my biggest regret.
I wasn’t OK. I was diagnosed with epilepsy and was depressed about it — understandably. I was paranoid and constantly thinking about when the next “spasm” would happen. My friends didn’t know I had epilepsy, and I acted as though I was emotionally fine to my family. But I would cry in private and pray for it to go away.
This was before Facebook, and I was only 14, so I didn’t know of any online support groups. I battled this alone, which didn’t have to happen, even if the support only came from people online who were also coping with seizures.
To anyone who has been just diagnosed: Talk about it. Even if it’s just one friend or a family member, open your heart up entirely. Coping with epilepsy isn’t easy, and fighting battles alone only makes it harder to win.
I’m 27 now and pretty open about my epilepsy. It took me 10 years to be comfortable about opening up about it, but now I am happy to. People don’t judge me the way I thought they would. I feel as though I made my battle more difficult than it had to be by hiding the issue. Hiding creates unnecessary worry, and you already have enough to be worried about.
What also helped was having a friend who also had epilepsy and was more open about it. When you have an invisible illness, there’s a chance that someone you know is also fighting the same battle and you have no idea. Be the one to start the discussion. You will be proud you did.