My Epilepsy Journey

There’s a kind of loneliness that doesn’t come from being alone.
It comes from being surrounded by people who just don’t understand what you’re going through — no matter how hard they try.

This is the kind of loneliness I’ve felt living with epilepsy.

When People Just Don’t Get It

You try to explain what you’re going through. You talk about the seizures, the exhaustion, the fear of the next one. You describe the confusion, the fog, the bruises, the embarrassment, the brain fog, the injuries, the unpredictability — and they nod, politely.

But then they say things like:

• “You don’t look sick.”
• “At least it’s not cancer.”
• “Can’t you just take medicine for that?”
• “Well, you were fine yesterday.”

And that’s when it hits: they don’t get it.
They don’t want to get it. And suddenly, you’re completely alone in your experience.

The Silence Between the Seizures

People often see epilepsy as something that only matters when you’re in the middle of a seizure.
But they don’t see what happens between them:

• The worry before going out in case one hits.
• The overthinking.
• The checking of meds and avoiding triggers.
• The hiding of bruises.
• The quiet voice in your head wondering: “Will this ever stop?”

All of this happens in silence. In private.
So the loneliness grows, because no one sees the war happening inside.

Friends Disappear, or Just… Change

Some people pull away.
They don’t know what to say or how to help — so they avoid you altogether.

Others stick around but start treating you differently. Like you’re fragile. Like you can’t do things anymore. Like your life is now only about seizures.

And sometimes, that makes the loneliness worse than if they’d just left.

But Here’s What I’ve Learned

The people who matter — they listen.
They might not fully understand, but they try.
They check in. They learn. They ask how to help. They don’t pretend to have all the answers.

Those people are gold.

And if you haven’t found them yet, I want you to know this: you’re not alone.
I’ve been there too. That’s why I started My Epilepsy Journey — not just to tell my story, but to give people like us a space to be heard, understood, and supported.

If You’re Feeling Misunderstood Today…

Please remember this:

• You don’t have to explain yourself to everyone.
• You don’t need validation from people who aren’t willing to learn.
• You deserve people who see the real you — the strong, resilient you — not just the diagnosis.

Your story matters.
And one day, your voice will be the reason someone else feels less alone.

With understanding,