The Side of Epilepsy You Don't See When I Look Healthy

Growing up I tried to have a “normal” childhood, but when you have epilepsy it’s kind of hard to be “normal” while having to worry about what could happen. I was diagnosed with seizures when I was an infant. I would have staring spells where I would “zone out” for about 10 seconds, then act like everything was normal. By the time I was 5 my grandmother took me off of the medicine I was on because she believed I was no longer having seizures, so I started going to school. Everyone constantly worried they would come back and by the time I was in high school everyone believed they had. I had an EEG before or during every school year between freshman and senior year, but they couldn’t find any “present activity” so I was sent home with migraine medicine to help my blackouts and headaches. But the real symptoms started happening after I had my daughter.

Other relevant stories:
• What Does a Seizure Feel Like
• Epilepsy Life Expectancy
• How Many Hours Should a Person with Epilepsy Sleep 

What I wish I could get people to understand is that even though I may look “normal,” I don’t feel like it. I have to be extremely careful with my daughter — if I feel like I’m about to start shaking, then I have to put her down or give her to my fiance so I don’t drop her in case I am going to have a seizure.

Probably one of the things people don’t understand the most is that when I cancel plans or even call in sick to work, it’s not because I don’t want to do anything; in fact, it’s the complete opposite. I wish I could do everything all the time, but when I feel my shaking come on, I know that I have to lay down, and most of the time it’s for hours because I know anything could cause one to happen.

When I don’t reply to someone early in the morning, it’s not because I’m lazy, but sleep deprivation is part of what causes my seizures. One thing I get criticized for the most is pushing stressful situations off like it’s nothing, but they don’t understand that my seizures are also stress-induced and if I let everything build up, then instead of just uncontrollable shaking, I would have a full on grand mal seizure — which is what happened when my daughter was about 3 months old. I was up with her 24/7 and getting stressed over what I needed to do all day and trying to accomplish everything, and slowly I started shaking. Each and every day it got worse until one night I had a grand mal seizure.

Another thing I have to deal with even when looking “normal” is that I can’t drive. People ask me all the time, “Hey do you want to come meet us?” and I have to politely decline because I have no way of getting out unless I can find someone who can give me a ride, which is not that easy. When I have a doctors appointment, I have to ask someone in advance if they can take me and usually, that means between the time I ask and when the appointment is they could cancel.

When I go in for a job interview, people see this healthy, young woman who is ready to start working as soon as she can, but when the mention of epilepsy comes up, it’s as though I’m counted as someone who could be a liability and who won’t come in all the time. Sometimes people think I make it up to get attention and say, “No way, you can’t have that! You go out and do way too many things with friends and things that could make you have one.”

When I’m out in public and start to shake, people automatically assume something bad is going to happen or that I’m going to go rabid like a wild animal and attack their children, so they rush them away as fast as possible. The only time I get asked if I’m OK afterwards is if the people are genuinely worried or if my fiance is around.

So, a lesson for everyone is that even if you don’t understand what is happening in the person’s life, you still shouldn’t judge them or assume things at all. And if you have a condition no one can see, remember that others do, too.