10 Things To Know About My Life With Epilepsy

Living with epilepsy for over 15 years has shaped my journey in ways I could have never imagined. It’s easy for people to see the outward effects of seizures, but there’s so much more beneath the surface that often goes unnoticed. Epilepsy impacts my daily life in unique ways.

Below are a few key things to help others understand what it’s like to live with this condition:

Epilepsy is different for everyone –

Not all seizures look the same, and epilepsy affects people in unique ways. My experience may differ from what others imagine or have seen.

Seizures aren’t always dramatic –

Some of my seizures may not involve convulsions; they can be subtle, like staring spells or brief moments of confusion.

I may need extra time –

After a seizure, I can feel disoriented or tired and may need time to recover. Please be patient if I need a moment to rest or collect myself.

It’s more than just a condition –

Epilepsy affects not only my brain but my emotions, and daily routines. It’s a part of my life that requires constant management.

I have good days and bad days –

There are times when I feel perfectly fine and others when I’m dealing with fatigue, anxiety, or the aftermath of a seizure.

I can’t always predict my seizures –

Even though I try to avoid triggers, there’s no guarantee I won’t have a seizure. This uncertainty can be stressful.

I’m not fragile, but I need understanding –

I live my life fully, but certain activities or environments may be risky for me, so I sometimes have to adjust how I do things.

Epilepsy can affect my memory –

I might forget things, even simple or recent details, because brain fog is common for people with epilepsy.

It’s okay to ask questions –

I’d rather people ask me questions about epilepsy than make assumptions. Awareness and understanding can help reduce the stigma.

I’m strong, but I appreciate support –

Living with epilepsy has made me strong, but having the support and kindness of those around me means the world to me.

At the end of the day, I want people to understand that epilepsy is more than just the seizures you might see. There’s a lot that goes on behind the scenes that isn’t always obvious.

Now, it’s your turn! What’s one thing to know about your life with epilepsy?