A diagnosis is a strange thing to hold. It’s usually just one word, sometimes two — small enough to fit on a chart, small enough to say out loud in a single breath. And somehow that one word is supposed to hold years of things that never made sense, plus everything that comes after.
I was fifteen when I got mine. Epilepsy.
What That Word Actually Did
The strange part wasn’t the word itself. It was what happened in the days after, when I started going back through years of memory with new eyes. The classroom moments teachers had chalked up to a wandering mind. The times I’d been told to focus, to pay attention, to just try harder. None of that had ever fully made sense to me, even as I absorbed it as a verdict on my character.
A diagnosis doesn’t just describe your present. It reaches backward and rewrites how you understand your past — and that’s where the strange, double-edged nature of it lives. Suddenly there was an explanation. Not a character flaw. Not a lack of effort. A neurological condition that had been present long before anyone had a name for it, including me.
That reframing felt like relief and grief arriving at the exact same moment, which is a hard thing to explain to someone who hasn’t lived it. Relief, because the years of quiet shame about struggling suddenly had a real explanation behind them. Grief, because an explanation doesn’t hand any of those years back. It just sits there next to everything that already happened, making sense of it without undoing it.
I remember thinking, somewhere in that first stretch of nights: this changes nothing about what already occurred, and it changes everything about how I understand it. Both were true. Neither one canceled the other out.
For Anyone Getting That Word Right Now
If you’re sitting with a diagnosis right now — epilepsy or something else entirely — I don’t have a tidy resolution to offer you. What I can tell you is that the relief and the grief aren’t a contradiction you need to resolve. They can both be true for a long time, sometimes for years, and that’s not a sign you’re handling it wrong. It’s just what an honest diagnosis actually feels like, once the clinical explanation is over and the human part of absorbing it begins.
The word doesn’t erase who you were before you had it. It just gives you a clearer map of ground you’d already been walking, often for longer than anyone realized — including you.
That first word was only the beginning. What it actually cost me in the years that followed — the parts nobody warns you about — is its own story, told in What Chronic Illness Costs During Adolescence.
Read the Full Story
This post touches one moment. The fuller account — that day, the years that followed, and what it took to build a life on the other side of it — is in “Still Walking.”