Epilepsy Made Me Concern My Physique — How I Reclaimed My Confidence

At age 13, I used to be identified with juvenile myoclonic epilepsy (or JME). It’s not practically as extreme as my sister’s type of the situation, however nonetheless severe.

Once I was 15, I skilled my first tonic-clonic seizure (also called a grand mal seizure), which causes muscle contractions together with lack of consciousness (most likely what somebody may think once they consider a stereotypical seizure). At that time, I used to be placed on medicine for my epilepsy. 

I had a whole lot of negative effects on account of this medicine, and I wasn’t actually open with anybody about what I used to be going by way of. I skilled a whole lot of nervousness, hyperactivity, and insomnia. Plus, the second I used to be placed on medicine, my high quality of sleep was severely impacted. I felt very low, and unable to pay attention—that are signs of epilepsy, however I imagine they had been exacerbated by the medicine, as properly. Contemplating sleep deprivation and stress are two main triggers, this was all very regarding. 

Whereas individuals primarily affiliate my situation with seizures, it’s additionally about residing with the concern of a seizure. In my case, I used to be having shut to at least one grand mal a 12 months, however there was an incessant concern of getting one on the flawed time, or what would possibly occur consequently—falling and hitting my head, dropping management of my bladder, experiencing it when nobody was round. 

There are additionally completely different sorts of seizures, past grand mal. I additionally undergo from myoclonic jerks, that are little interruptions within the mind—I all the time describe them as like matrix interruptions, when my arms will type of jerk open. I additionally expertise what’s generally known as an aura, which appears to be like like I’m zoning out, however actually it’s a kind of seizure. Plus, people who find themselves epileptic have photosensitivity, so I wanted to be cautious of brilliant flashing lights, to keep away from triggering a seizure. 

Every time I had a seizure, I felt like a chunk of myself had been robbed indirectly. Every one precipitated mind harm to a point and, in my expertise, a lack of confidence. It seems like your entire world has been turned the wrong way up. It’s completely terrifying to get up and see individuals above you, asking if you realize who they’re, and should you’re okay. In these moments, you don’t have any thought what occurred, aside out of your pounding headache. 

There are simply so many layers to it that individuals who don’t have this situation might not take into account. And, sadly, epilepsy comes with a horrible stigma, so I just about stored my invisible sickness to myself for years. 

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