I was asked the other day what it was like to have epilepsy. What it feels like. It took me a few seconds to think how I could best describe it. Asking someone how it feels to have something abnormal is a difficult thing to describe because it could very well be a feeling that other people haven’t experienced so it can be difficult to understand. So here, to the best of my ability, is what it is like to have epilepsy.
#1 The seizure
Different epileptics get different sorts of seizures or several different kinds. I’ve gotten grand mals and tonic-clonic seizures. Some people are awake for their seizures and to me that sounds like a terrifying hell. I, luckily, if you can call it that, am unconscious for them. Obviously when you are unconscious it’s like sleeping. It’s this murky darkness where you float in oblivion. Then you come to and you’re confused but you don’t realize it. You’re more confused that you’re confused. You’re disoriented, tired and dizzy. You have this weird pressure on the sides and back of your skull. Sometimes you have blood in your mouth, on your face or a bitten tongue. When you’re finally conscious you feel like you just got your ass kicked in a fight. Another way to describe it is this: You know when you were a kid and you’d spin around in a circle until you fell down and the room would spin for a few seconds? That’s what it’s like for me for days. It takes about a week before I feel normal again. It’s not as fun as it was when I was a little kid.
#2 Everyday Life.
When you don’t have anything that is clearly wrong with you on the surface no one understands what you’re going through, and some will even attack you for it. Epileptics aren’t the only ones who get this treatment, it’s very common with traumatic brain injury (TBI) too. It’s an invisible but very constant problem we have to deal with. People can’t literally see the scars and so they assume the worst about us.
I am tired ALL the time. I would liken it to how you feel after a huge study stint in school or when you only get less than three hours sleep. Hollow and exhausted. Then, despite how tired I am, I can rarely nap or sleep unaided. So that’s even more fatigue. Despite how I feel I have the same responsibilities as everyone else. I’m not saying I SHOULDN’T have to do all those things, people just aren’t aware that it’s much harder for me.
Epilepsy has given way to other problems besides a seizure disorder. I have PTSD because of the dramatic shock to the brain and it can be very hard to deal with that. I have anxiety and I have depression as well. It’s not easy for me no matter how well my life is going. You end up taking pills to stop one problem and more pills to help with the side effects…
Sex life is nearly non-existent because of the chemical imbalance. My memory is horrible, I have to keep notes and set alarms or I won’t remember much of anything. I’ll tell people things that I told them an hour before because I forgot I told them. It’s like I’m an old woman. I’ve told my friends to stop me if I’ve already told them the story. My stuttering has gotten much worse. Before my first seizures I stuttered a little bit but nothing compared to how it is now. I’ve been experimenting with different ways to hide it. Based on the looks on people faces I haven’t met with success yet.
Despite my condition I have had some achievements. Only 15% of epileptics finish college. I think the above descriptions illustrate why it’s so difficult for people like us. I am part of that 15%, not only that but I graduated with honors. It’s quite the achievement for an epileptic.
#3 The people
Other people are one of the worst parts about it, as you can probably imagine. As I said before, they don’t understand. Some pity you, which I hate because it makes me feel like a victim and others mock me for it like it’s a joke. Despite flashing lights not being my trigger I can’t tell you how many times people have flashed stuff in my face to see if I’ll get a seizure as a “joke”. Some people, particularly employers, look at me like I’m a potential threat to the stability of their business. Many people look at me like I’m made of glass and can easily shatter. Like I’m a ticking time bomb waiting to go off. People not letting me be more than epilepsy out of their fear and ignorance is what hurts the most. People not letting me be anything more than an epileptic is what cuts deepest.
In regards to people and the difficulties that epilepsy presents it’s a catch 22. I want to be treated like everyone else. I don’t want to be a victim. I don’t want to pull less than my fair share of the load. However, I do want people to be sympathetic to my condition and learn to see when I’m getting tired and/or dizzy and need rest. It’s a catch 22 because it appears I can’t have one without the other.