5 Things I Wish Others Understood About Living With Epilepsy

I’ve been diagnosed with epilepsy for years, and people automatically assume the worst about it. They wonder, how do I work, how am I in school? So here’s what I want you to know before making judgments about someone with epilepsy.

Other relevant stories:
• Does Epilepsy Go Away
• What Are the 12 Types of Seizures
• What to Do When Someone Has a Seizure

1. Epilepsy can affect people differently. It can be a struggle, and some of us are unable to work or live alone. But that’s not necessarily the case with all of us.

2. Having epilepsy isn’t a choice. Just like with some other disorders, some of us get diagnosed early (like I did at just 5 months old) and some of us get diagnosed later in life. But it’s not something we woke up and decided to have one day.

3. It involves more than seizures. There can be side effects from our medication, such as dizziness, stomach upset and feeling tired. It can affect mood as well. There is more involved with epilepsy that is hard to understand unless you go through it.

4. It can feel like we’re fighting a battle. Epilepsy can feel like a battle all in itself, especially for those with uncontrolled seizures. Can you imagine having multiple seizures a day? Now do you see the battle?

5. We are warriors. When you’re fighting the battle of your life, you can’t be anything but a warrior!

My advice to anyone living with epilepsy who faces assumptions or judgment because of it is this: Ask your friends and family to read this story and other stories about epilepsy. Ask them to join an epilepsy support group. They might not understand unless they go through it themselves, but they need just as much support as we do. As hard as it is on us to be the one going through seizures, medications, appointments, etc., it can also be hard watching someone you love go through that.

We have to look at it through both points of view. So do not be quick to get mad when someone says or assumes something we don’t like or we know isn’t true. I suggest smiling and pulling up the facts for them instead.