My Epilepsy Journey

When people think of seizures, they often picture someone convulsing on the floor, eyes rolling back, or shaking uncontrollably. That’s the version most people see in films or TV. But the truth is, a seizure is so much more than what people see. It’s something I feel — deeply — from the inside out.

And today, I want to tell you what that really feels like.

The Warning Signs – “Something’s Coming”

Before a seizure hits me, I sometimes get a warning. It’s like my body is whispering, “Get ready.”

I feel a strange pressure in my head, like a fog rolling in. My vision might blur. Sounds around me become distant, like I’m underwater. I feel disconnected from everything — even my own hands.

Sometimes I get a metallic taste in my mouth. Sometimes I feel anxious or confused for no reason. Sometimes there’s no warning at all — just a sudden drop, like falling through a trapdoor.

During the Seizure – Trapped in My Own Body

This is the part that’s hardest to explain.

While my body does whatever it does — shaking, locking up, falling — my mind is either completely gone… or partly there, trapped. There have been times where I can hear voices, feel pain, or sense people around me, but I can’t move or speak. It’s terrifying.

It feels like I’ve lost control. Like I’m watching my body from the outside. And all I want is for it to stop.

Other times, I wake up on the ground, completely confused. “Where am I?” “What happened?” My heart pounds. My body aches. And I feel embarrassed — even though I know it’s not my fault.

After the Seizure – The Fog and the Fear

The aftermath is almost as hard as the seizure itself.

I feel exhausted. Sometimes I sleep for hours. Sometimes I cry. My head hurts, my muscles ache, and my mind feels like mush. And there’s always that fear: When will the next one come?

I often carry invisible injuries too — not just bruises or cuts from falling, but emotional ones. The fear of being judged. The frustration of feeling weak. The guilt of having it happen in front of someone I love.

Why I’m Sharing This

I’m not telling you this for sympathy. I’m telling you this because people with epilepsy deserve to be understood.

We’re not just statistics or “those people who shake.” We’re living, breathing human beings going through things most will never see — or understand.

If you know someone with epilepsy, the best thing you can do is listen. Learn. Ask how you can support them. And please, never assume you know what it’s like — unless you’ve lived it.

To everyone living with seizures:
I see you. I feel what you’re feeling. And you’re not alone.

Stay strong,