You don’t understand epilepsy so don’t pretend like you do.

First off that was directed at someone(s) and not the general public, my gentle readers. However, as the general public is uneducated by my disorder and that ignorance has landed me some drama from a certain family that has no wish to understand. Not even the nurse in the family. I could be the most furious at her.

Here is some food for thought: In the weeks after someone has a seizure DON’T yell at them about their odd behavior or if they seem protective of themselves and may seem overly defensive. That’s normal. Your behavior isn’t okay even if their’s frustrates you. Give them time. If you don’t you’re not any better than what you’re mad at the epileptic about. If you can’t comprehend or accept that leave the person alone entirely. Your aggression is only detrimental to their recovery and honestly, they’d be 100x better off without if you not 100,000,000x.

If you want to correctly understand what the person is going through, even one tiny iota, then research it if you have an epileptic person in your life. You’ll do both of you a world of good. By far the hardest thing I deal with is the ignorance of others because I LOOK normal. I don’t wear a helmet, I don’t have flashing lights as triggers (so far as I know they only give me a head ache. I suppose if I was stuck in a room with a constantly flashing light)

How serious is epilepsy, do you ask? Do you think maybe they are just hamming it up for special treat me? Honestly, fuck you then. Let me enlighten you.

• Most seizures end on their own and cause minimal concerns.
Yet during some seizures, people can injure themselves, develop other medical problems or life-threatening emergencies. It should be considered very dangerous because of the risks.

•The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population. Know what that means? On average I have a higher chance of dying earlier than YOU. YOU. YOU. YOU. YOU. YOU don’t have to deal with that fear so if you ignore it then fuck you and the horse you rode in on. Do I need to reiterate my knee jerk reactions with anger and defensiveness? It’s a natural survival response from an organ that isn’t functioning properly

•Sudden Unexpected Death in Epilepsy (SUDEP) is the most common of death for people with seizures. It is not frequent (every 1 in 1,000 epileptics) but it’s a very real problem that people need to be aware of. I’ve semi-known (we had Thanksgiving together but I didn’t know him before hand or afterwards) but he died from SUDEP a few months later. It was like someone just switched off the light and he was done. Do you have ANY IDEA how fucking scary that is? To be in the same boat as something as RANDOM as that. It’s much more scarier that thinking “Oh, people can die at any time so live, live, live!” It’s much different when statistics back up your fear. If you’re frightened scientific facts can increase your paranoia. Even when you’re on the right medication it’s at the back of your mind. “What will I encounter today? Dub step from some passing motorist with a small penis so he compensates and looks for attention? Flashing lights that people will flash in my face because they think it’s funny? (Yes, that has happened. They got a kick in the shin. I hope they cried when they left.) Will it be a trauma that hurts my processing temporarily and I incidentally put myself in danger without knowing what I’m doing? Stress? There is always stress and I always seem to be struggling with how to handle it.

What will those things do to me? Will it kill me this time? What happens to everyone else if I die? I mean the world to at least two people and I can’t imagine them recovering (not that I’m awesome, they just love me that much) if I was to unexpectedly die. I’d ruin their lives and there is practically nothing I can do about it.

What are some additional side effects? So glad you asked. (Because you didn’t)

•’Not doing well’ at home, school, work, or with friends.
•Cognitive or learning problems that require special help or accommodations
•Symptoms of depression, anxiety, or other changes in mood or behavior
•Problems sleeping
•Unexplained injuries, falls or other illnesses
•Thinning of the bones or osteoporosis
•Reproductive problems
•Risk of death
Steven C. Schachter, MD | Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 7/2013

I haven’t had to deal with all of these, thank God, but I haven’t tried to have a child so I don’t know if I have reproductive problems yet. God willing, I won’t. Not much point in living if I can’t spread by DNA, you know? I could always adopt and I would love that child as dearly as a biological child but who will carry on the lineage? I digress.

The ones I deal with 3, 4, and 5. Memory can also be a large problem. Guess how I know? Here are some common ones:

• Trouble remembering names that they once knew. (get that A LOT)
• Forgetting appointments or having trouble remembering when to take their medicines. (yep)
• Can recall things from the distant past, but can’t recall events that happened in the past week. (every day. Fun fact, once those events enter “distant past” I can recall them)
•Forgetting things more easily as time goes by. Some people say they feel like they’ve ‘missed part of their life’.
•Difficulty paying attention or concentrating.
•Feel that their thinking is slowed down.
Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 2/2014
I deal with 1, 2, 3, and five 5.

There is a lot more to teach you all but I think if I make this any longer no one will read it.

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4 thoughts on “You don’t understand epilepsy so don’t pretend like you do.

  1. Gede Prama says:

    site is really marvelous. Thank you for sharing and Greetings from Gede Prama 🙂

  2. mickcgorman says:

    I thought I was the only one mad at the world. People do appear as though they don’t give a toss about my Epilepsy though!

    • It’s the “curse” of having an “invisible illness” TBI and PTSD people go through it all the time. 30 American war vents kill themselves every day for untreated PTSD. Epilepsy is a bit different of course but because we look normal we’re expected to act normal. We’re not normal. We’re ourselves, but we’re this as well. We have to pretend to be strong when we’re having dizzy spells. We have to ignore the head aches. We have to fake the energy when we’ve had yet another sleepless night. We have to laugh when we want to cry. No one will let us be anything else so we have to have this…invisible armor…except, at least for me, it’s full of holes.

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