At age 13, I was diagnosed with juvenile myoclonic epilepsy (or JME). It’s not nearly as severe as my sister’s form of the condition, but nevertheless serious.
When I was 15, I experienced my first tonic-clonic seizure (also known as a grand mal seizure), which causes muscle contractions along with loss of consciousness (probably what someone might imagine when they think of a stereotypical seizure). At that point, I was put on medication for my epilepsy.
I had a lot of side effects as a result of this medication, and I wasn’t really open with anyone about what I was going through. I experienced a lot of anxiety, hyperactivity, and insomnia. Plus, the moment I was put on medication, my quality of sleep was severely impacted. I felt very low, and unable to concentrate—which are symptoms of epilepsy, but I believe they were exacerbated by the medication, as well. Considering sleep deprivation and stress are two major triggers, this was all very concerning.
While people primarily associate my condition with seizures, it’s also about living with the fear of a seizure. In my case, I was having close to one grand mal a year, but there was an incessant fear of getting one at the wrong time, or what might happen as a result—falling and hitting my head, losing control of my bladder, experiencing it when no one was around.
There are also different kinds of seizures, beyond grand mal. I also suffer from myoclonic jerks, which are little interruptions in the brain—I always describe them as like matrix interruptions, when my hands will sort of jerk open. I also experience what’s known as an aura, which looks like I’m zoning out, but really it’s a type of seizure. Plus, people who are epileptic have photosensitivity, so I needed to be wary of bright flashing lights, to avoid triggering a seizure.
Each time I had a seizure, I felt like a piece of myself had been robbed in some way. Each one caused brain damage to some degree and, in my experience, a loss of confidence. It feels like your whole world has been turned upside down. It’s absolutely terrifying to wake up and see people above you, asking if you know who they are, and if you’re okay. In those moments, you have no idea what happened, apart from your pounding headache.
There are just so many layers to it that people who don’t have this condition may not consider. And, unfortunately, epilepsy comes with a horrible stigma, so I pretty much kept my invisible illness to myself for years.