The public perception of epilepsy

When filling out any application, whether it be auto insurance, medical/general existence insurance, job applications, dating profiles; anything that requires some form of disclosure has epilepsy with a capital E as something they want to be notified about. I haven’t had a seizure in almost 4 years but they generally don’t care about the length of time. That the thought of epilepsy crossed your mind during your lifetime is a sign you might literally hit the ground rolling.

And that’s where the perception of epilepsy can become a stereotype that those first diagnosed will struggle to shake off. A gloriously simple education of epilepsy is found at Epilepsy.com, who note:

“Public perception and misunderstanding of epilepsy causes challenges often worse than the seizures.”

This doesn’t mean everyone who has no experience of epilepsy is a judgemental bigot, but the 40 different types of epilepsy are not easy to explain to anyone, let alone those diagnosed with it. But those that are affected by Grand Mal seizures are the ones whom the public associate most with the symptoms of epilepsy. What’s now referred to as Tonic-Clonic seizures, is based in the frontal lobe which is closely linked to our motor neuron functions, meaning that when a seizure hits it can be followed by a loss of consciousness and violent body movements. My heart truly aches for those that have to live with this. Epilepsy at its most severe. I know a girl who had this epilepsy type and encountered it while running on a treadmill. A painful experience that I sympathize with, but find hard to fully to relate to when I was just dealing with temporal lobe epilepsy.

This is because temporal lobe epilepsy can be quite a trip. I’ve never taken Lucy in the Sky with Diamonds, but I wonder if a temporal lobe seizure has a small relation to taking a speck of dust from an LSD tab. As I referred to in my previous post, my seizures were a bizarre run of thoughts about Japanese manga style video games and TV shows alongside my stomach not feeling at its best.

Explaining this to my dad was no doubt met with a sliver of skepticism, because I can be one of heck of a hypochondriac. He did some research when I told him about it but I was re-assured when he read, “The experiences and sensations that accompany these seizures are often impossible to describe, even for the most eloquent adult.” This was almost a compliment, knowing that even those of my grand intellectual ability can still struggle to explain what in the blue blazers is going on.

Despite my initial seizures not being as disabling as other forms, my life was still changed by them. I was now in a world of neurologist visits, painful side-effects trialing which medication is best, the offer of having my skull sawed open for a surgical remedy, been told not to drive for 6 months without a seizure (a crippling blow for a mid 20’s man who just happens to experience 30 second crazy thoughts and cold sweats every 2-3 weeks.) My seizures were certainly strange for me, but I was beginning to feel like a burden on society. Those with TLE who have that on their heart, know I identify with you.

If you’re like me and  were suddenly diagnosed with TLE, understand that even if you feel like the only one in town, it’s the most common form of epilepsy; and one of the most treatable. Know there are plenty of others out there who have to deal with it. The world around you may fear you’ll crash to the ground at any given moment, but sites such as Epilepsy.com and the hypochondriac bible of Web MD is something you can show those around you what you’re specifically living with. Sometimes friends aren’t the most friendly in these situations, but I’ll follow up on this in my next post.

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