Rare, Real and Finally Speaking Out

By Killian Pukallus

I was eight years old when it started.

The dizziness, the slurred speech, the way my legs would give out and I’d feel like I was moving through static. I didn’t have the words for what was happening back then—I just knew something was wrong. But no one believed me. Teachers said I was making it up to get out of class. Doctors brushed it off. Friends drifted away when I couldn’t keep up. And slowly, I started to doubt myself too.

It took eleven years to finally hear the words: Episodic Ataxia Type 2.

A rare genetic neurological disorder that causes sudden attacks of imbalance, weakness, and disorientation. It affects the cerebellum—the part of the brain that controls coordination. Episodes can be triggered by stress, heat, exhaustion, or sometimes nothing at all. I was diagnosed at 19 and started treatment with acetazolamide (Diamox) that same year.

By then, the damage had been done. I’d missed out on most of school. I couldn’t participate in sports, camps, or even basic group activities without fear of collapsing or having an episode. I’ve never been able to work a job. I can’t drive. I’ve never held a license. Relationships are complicated—friendships too. Try explaining to someone that you “look fine” but feel like your brain is spinning and your limbs have stopped listening.

EA2 is invisible—but it shapes every part of my life.

Some days I feel almost okay. Other days, I can’t get out of bed. There’s no warning, no pattern. I live in constant fear of being misunderstood or judged. I get called lazy. I get told I’m overreacting. People look at me like I’m weak or dramatic. But they don’t see the effort it takes just to stand, just to talk, just to exist in a body that betrays me over and over again.

And still, for years, I stayed quiet.

I didn’t want to be the “sick one.” I didn’t want pity. I didn’t want to explain myself again and again just to be doubted anyway. But silence didn’t protect me—it isolated me.

So now I’m speaking out.

I’ve launched a blog and an awareness campaign to share what living with EA2 really looks like. I want other people with rare or invisible illnesses to know they’re not alone. I want to raise awareness, not just for EA2, but for every person who’s ever had to fight to be believed. For everyone who’s ever heard “but you don’t look sick.”

My story isn’t over—but this is the chapter where I take the mic back.

Rare doesn’t mean invisible. Invisible doesn’t mean imaginary. And I refuse to be quiet anymore.

You can follow my journey at 10pillsdeep.wordpress.com or find me on Instagram @killianandea2.
Let’s be loud together.