Stories - Ramsay Hunt Syndrome

Why this page exists

The accounts I went looking for.

When half my face stopped working, I searched for someone who’d actually lived through this and could tell me what was coming. I couldn’t find them.

Clinical pages told me what the virus was doing to my nerve. Forums were full of people as lost as I was. Nowhere could I find a person a year down the road, willing to just tell the truth about what it’s really like.

So this is where those voices will live: honest, first-person accounts from other people who woke up to a face that wouldn’t move and found their way through it. Not medical advice — just the truth, so the next person reading at 2 a.m. doesn’t feel as alone as I did.

Seth

Patient · Founder

Coming soon

The first stories are on their way.

Gilbert, the goose — your field guide through Ramsay Hunt Syndrome

“The dark stretch never lasts the whole flight. No goose gets left behind — and neither do you.”

I’m gathering the first accounts now. Check back soon to read them — or, if you’ve been through this yourself, be one of the first to share yours below.

Share your story

However you’re living with RHS — tell it your way.

Day three or year five. Recovered, still deep in it, or just getting by. The good, the bad, the ugly, and the plain boring — I want all of it.

A lot of people tell me they’ve got nothing good to share, that they’re just dealing with it. That’s exactly the story we need. The person reading at 2 a.m. isn’t looking for a happy ending — they’re looking for someone honest who’s in it too. So don’t overthink it: a sentence or ten pages, a good week or a hard one, send whatever you’ve got. You keep ownership of your words, you’re credited however you choose — name, first name, or anonymous — and I may lightly edit for length and clarity.

The more of us who tell it out loud, the fewer people face it in the dark.

Email your story

Your story stays yours — sharing it gives us permission to share it, credited however you choose.