Things About Epilepsy Nobody Tells You
I have epilepsy.
I have epilepsy, also known as seizure disorder. There is no cure, so it's with me until the day I die. Please note that have never told more than one person at a time that I have epilepsy. Also, what you are about to read is more than I have ever told anyone about living with my condition and how I feel about it. It's not easy for me, so I need some mercy.
My seizures started after a bad head injury in the Army. I did everything I could to stay—and the Army did everything they could to keep me—but treatments didn't control my seizures enough to meet military requirements. I was ultimately medically discharged a couple years after my diagnosis. I could be fine as a civilian but not as a soldier.
For the most part, people are understanding and supportive when I tell them I have epilepsy. If there is any kind of stigma, I haven't noticed it. Working with my neurologist, I was able to find a combination of three medications to help me live a somewhat normal life.
Living with epilepsy is different but possible. There are some things that were unexpected—things that nobody told me.
Here are a few.
Everyone's a babysitter... and this will drive you nuts.
Now this one is tricky because seizures come in all shapes, sizes, and frequencies. Some people with seizure disorder will need more attention than others. However, I can leave it to everyone I know to be extra delicate with me.
I have, on average, about two to as many as five seizures a week with my current medication. These are complex-partial seizures, meaning that I see them coming. I have about five seconds to stop what I'm doing and sit down. Sometimes, I can tell whoever I'm with that it's coming on—usually with a loud grunt or just touching them on the arm.
If I miss a dose of medication, then I can expect tonic-clonic seizures. These are the big ones everyone thinks of when they think of seizures. I still get the same warning of a complex-partial seizure, so I have some time to warn others. (Don't worry, I don't drive or use firearms. In fact, it's these restrictions that prevented me from staying in the Army.)
It is always touching to have people looking out for me, but sometimes, it can get ridiculous. When I'm in deep thought or even quiet for a few minutes, my girlfriend will turn to me and ask, "Seizure?" I say no but she doesn't believe me, so she keeps looking at me. So whether a seizure is coming on or not she is now on high alert.
She is amazing, and I love her dearly, but epilepsy has turned me into a delicate flower.
Everyone's a hero... and this will also drive you nuts.
There are three types of people you will encounter:
When people who don't know me too well notice I'm having a seizure, some of them freeze up. They've never seen a seizure before and don't know what to do.
Family and Friends
Whoever I'm with—if they know about my condition—will probably back up and give me space. If there's any furniture or something that could cause injury nearby, they might clear that away.
These are the folks who have to "save the day." It's as if a seizure is a bank robbery in progress. The victim is in danger and must be saved! Unfortunately, these people have no idea what to do, but they try to do something anyway.
Sometimes, they'll do something utterly inane but harmless, such as shouting at me or shouting at everyone else. Other times, they'll do something that, in any other situation, would be criminal behavior, such as grabbing my body or face, or trying to feed me my wallet. Still other times, one wonders if what they're doing is heroics at all. This might be something like trying to slap my face or pouring a drink on me.
A cynic might think that these people just want a piece of the action. Everyone wants to be part of the circus. It's all eyes on me, right? Whatever.
What to do when someone has a seizure.
I'm not an expert. I'm not a doctor. I'm just a guy with epilepsy, and I'm telling you this: If you see someone having a seizure, don't do anything. If the person is sitting/standing close to you, back up and give him space.
They've had hundreds of seizures before and will have hundreds more to look forward to. Seizures don't last forever, so just let them ride it out.
If I'm wrong, tell the readers what to do in the comments section below. After that, stay away from me forever. If you want to be a real hero join the Army or something.
Everyone's an expert... and it will drive you nuts
If you're a health care professional, that's fine.
While in the Army, I was a medic, so as soon as I was diagnosed with epilepsy, everyone in my department had something to say. This was fine with me. They were all healthcare providers, and I wanted to know as much about epilepsy as possible.
They all asked me questions too, whether it was about my symptoms and experiences with seizures, as well as any family history of epilepsy (none). This was all fine with me.
If you don't know anything, that's fine.
Today, I am no longer in the service. The friendly conversations of caring coworkers has been replaced by noise—noise that doesn't stop. It just gets really annoying and really stupid. As soon as I tell someone I have epilepsy, I usually have to explain what it means. Not a problem. After all, less than one percent of people have it.
But a little bit of knowledge is dangerous—and annoying.
For those who know a bit about what epilepsy is, I can expect something like...
"Did your doctor prescribe ___?"
They know the cure. It might be one of the old school medications that they think I was never prescribed in the beginning. Or it might be some new miracle drug—as if neither I nor my neurologist has ever heard of it.
Better yet, "You have to go for alternative medicine."
It's all a conspiracy. My neurologist has to prescribe me pills to keep the drug companies happy. Nobody gets paid if I get cured. What I really need are herbs or crystals or something. That will do the trick. Oh, have I heard of "chelation therapy?"
"It's all in your head."
But the one I love the most is that "it's all a mental thing." I love this one not only because of its face-palm stupidity, but also because my father is certain of it. It's all about "willpower." Epilepsy is in the brain, and so is... the... brain! I can win if I really really want to, but if I'm weak, then I'll lose. Yes, of course!
Everyone's an optimist... even me
"Hey, Champ! It's not the end of the world. You can do (almost) anything."
Actually, probably everybody tells you this, and now I'm telling you. But in the beginning, you hear it so often from so many people that it starts to feel condescending. It's barely tolerable coming from your neurologist, but now, all these other people have to tell you. You soon become numb to it, and you forget it.
Sure they mean well, but do any of them know what it's like to have a tonic-clonic (or grand-mal) seizure? Do they know the fear that creeps inside, wondering when the next one will strike? Maybe if they also have epilepsy but not likely.
Then as time goes on, you realize that they're right. It's true. Life is different, but the fact remains: Life is what we make of it. I decided to travel. I packed my bags and decided to see the world.
Below is a video of super-athlete Jenny LeBaw. She was diagnosed with epilepsy as a child. I watch it now and then to remind myself that epilepsy is not the end of the world.
For more information about epilepsy...
- Epilepsy Foundation
The Epilepsy Foundation is your unwavering ally on your journey with epilepsy and seizures. The Foundation is a community-based, family-led organization dedicated to improving the lives of all people impacted by seizures. We are here for you.
- Purple Day - The Global Day of Epilepsy Awareness
On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness