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What It's Really Like to Live with Epilepsy

The Most Frustrating Parts of Being Epileptic

I tell my dad I don't feel good and walk into my room. I feel a rush of cold water run through my body and my stomach tightens. I know it's coming, but there's nothing I can do to stop it. I wake up in my bed, even though I know I didn't make it there. I look at my pillow and see blood. I bit my tongue again. I sit up.. too quickly and everything goes black for a second. My entire body feels like I'm in a dream. My dad runs into the room, and recaps my seizure. How long it lasted; where I fell; what I hit; how long I shook; how long it took me after to realize who he was. He's already called my doctor and I feel helpless and start to cry, again.

Having a seizure is by far the scariest thing I have ever experienced. I've had too many to count over the years, but it never gets any easier or any less frustrating. After a seizure, it takes a while to realize where you are and what happened. Living with epilepsy is difficult. After a seizure, you're not supposed to drive for six months. If you have one in the car, your insurance will drop you in seconds, even if you pulled over in time. Relatives don't want you to live alone. If you don't answer your phone right away, people just assume you had a seizure and rush over. Medication usually comes with a big dose of depression and anxiety. Don't even get me started on how all of your friends freak out in October with all the strobe lights for haunted houses.

Epilepsy sucks. It's even worse because a good deal of people don't know about it. Having to explain to someone you just met that you have seizures is the worst. They stand there and stare at you like you're going to drop right there and start shaking. They always have a million stupid questions. "Aren't you afraid you're going to swallow your tongue?" Aren't you afraid that your stupidity is contagious? It is physically impossible to swallow your tongue. It's connected to your mouth. That doesn't change when you have a seizure. "What do you do when you feel it coming on?" Usually nothing. There is nothing I can do except try to make it to a safe place before I fall. That's it. No sense in screaming my head off and making everyone around me panic. "I put something in your mouth right? To keep you from biting your tongue?" NO! I will choke. I have no control over my body. DO NOT PUT ANYTHING IN MY MOUTH. "What do you do after?" Cry and sleep. It's super emotional and really tiring. "Should I call an ambulance?!" No. I freaking hate hospitals and they are not going to tell me anything I don't already know. Leave me be. Unless it lasts some ridiculous amount of time, I will be pissed if I wake up in a hospital.

Everyone expects you to put your life on pause when you have a seizure and that's probably the most frustrating thing. I'm a mom. I don't get to pause my life. I don't get sick days. And after a seizure, the last thing I want to do is mope around for days pretending it's still effecting me. Yes, some people, seizures can effect them for days on end. But a person who has had a seizure before, knows their own body. They know when they are physically ready to stand back up and deal with life and they will let you know it. And that's exactly what you have to do. If you don't, it'll control every aspect of your life. If I had given up the first time I had a seizure, I would probably be on disability right now, not driving, not working and I probably wouldn't have my daughter and I would still be living at my parent's house.

People don't understand. They worry constantly about you having a seizure and don't get me wrong, it scares me too. I worry like crazy that I'll have a seizure in front of my daughter. But I can't let it stop me from living my life. Imagine what your life would be like if you never tried anything new or never did anything that scared you... not very great right? A lot of people consider epilepsy I disability. I'm not one of those people. And I don't know of one person who actually has epilepsy that considers it a disability. It's pushed me. It's made me stronger. It made me fight for everything I have. Everyone said I couldn't do this and I couldn't do that because what if I had a seizure. What if I had a seizure? I have it, I dust myself off, get back up and move on. Mild epilepsy is not a disability.

But November is epilepsy awareness month and more people do need to be aware. Epilepsy is a real thing. People have seizures on a daily basis and well there are some, like me, who only have them every once in a while, there are still people out there who are having more than one a day. Who are fighting everyday to be normal and can't. There are plenty of medications out there to control seizures but so many of them have such horrible side effects that it's almost not worth it. I've read the studies and done my own research on the effects of marijuana on a person with epilepsy and personally, it does help me control my seizures. I cannot say that that is true for everyone, but for everyone I know; it's basically a miracle drug. About three million people in the United States alone have epilepsy and about one in 26 people will experience reoccurring seizures in their lifetime. It's important to be educated on what to do and how to be safe and take care of someone during an episode. You never know when it might come in handy.

Read next: Reiki Healing
Michelle Schultz
Michelle Schultz

I'm mostly an editorial writer. I love to share my opinions and experiences. I don't hold back and I swear so if you take offense easily, my articles probably aren't for you. I'm a single mom just trying to stay sane. 


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What It's Really Like to Live with Epilepsy
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