If you speak with people who have epilepsy you may notice that there are, in general, more complaints about getting through day-to-day life than the actual seizures experienced. That is because there are so many side effects and things that go on behind the scenes before and after a seizure. The recovery, the auras, the incessant feelings that are hard to control.
It is never as simple as having a seizure and then going on with what you were doing. Sometimes there is a warning (the aura) and after there is recovery and then the cycle starts over again with a million different things going on. There is no true relief or consistent feelings of normality, just the time between that is spent conserving energy and holding yourself together.
Daily, there is nausea, exhaustion, emotions, and countless other issues that go along with having epilepsy. It is after all a chronic illness, and incurable. First, there is the constant feeling of insecurity because at any moment you could lose control of your own body. Then there comes dealing with medication side effects. And then there are problems with memory, sleep, diet, you name it. Having a seizure is the easiest part of this entire situation. And the worst part, nobody understands anything but the seizures.
My biggest issues are nausea, sleep, phantosmia, deja-vu and the most frustrating, jamais-vu which is experiencing something you know you are familiar with but it feels like the first time. Everybody has had this before to some degree, especially deja-vu. The difference is, mine are consistent and are auras. Jamais-vu happens to me after a longer absence seizure. Something simple like how to pick up that spoon, or put your coat on and for a few seconds that knowledge goes out the window and I am stuck staring at the object helplessly. The feeling is frustrating, to say the least (words don’t do it justice), and when it comes back to me I feel like an invalid. It used to happen daily when I was trying to find the right medication. Now it’s maybe once a week if that, and the rest of what I experience is mostly nausea and the weird doomsday feeling that is more like a panic attack that floods over me without any warning.
If you’re wondering what I’m talking about with auras, they are not what you think. They are considered “warnings” before seizures. I can’t read people’s colors or whatever mystical stuff that word is normally associated with. They are the problems I just talked about.
These things can ultimately be isolating. I may have had this condition for a while now, but I can’t deny the feelings and strain that set me apart from everyone else around me. It’s a lonely experience, and never quite feels normal. I would never wish this existence on anyone.
I’m making this sound very sad and “woe is me” but it really isn’t. It is just my life. This is how I experience life, and what I go through on a daily basis. I get through it, I still have fun and I have friends and family who care and try to help as much as they can. But I am always alone at the end and the only one who knows how it feels. My condition feels like it is ever evolving, so when something new crops up people panic while I just shrug it off. I am no longer surprised if I feel extra sick one day or am experiencing a new symptom or get yet another diagnosis, it is what it is.
A common analogy people use is that epilepsy is like an iceberg. You only see the very top when in fact there is a lot more going on under the surface. And every single person with epilepsy is very different.
So often I see people who define themselves as epilepsy warriors, fighters, and advocates, which is fine. But it’s very polarizing are sets the precedent that you have to be strong and fight all the time. Even people who don’t have epilepsy refer to their family members or friends who do have it as fighters in the midst of a seizure. This is more of a coping mechanism for others. And again, only shows the seizure. They are hard to watch, but like I said earlier, the easiest experience of this whole illness. Relief is felt by others when it’s over, but for us the after effects are the difficult part that only we can feel and understand. The seizure is just the tip of the iceberg. We just had a seizure (that we weren’t conscious for) now we have to deal with confusion, nausea, disorientation, exhaustion and maybe even some injuries. It doesn’t go away quickly.
It is more than what you can see and is a life-changing thing, and it’s ok to not be a warrior and put on a brave face to make others comfortable.