"I woke up in the ICU after a 15-hour surgery, expecting to go home in a week. Instead, I spent 130+ days in the hospital, had 17 surgeries..." - Sydney's story navigating the unexplainable.

On August 8, 2023, I had jaw surgery and that was the day everything changed. My surgeon did everything right, but my body didn’t. Within days, my jaw shifted so far over, no one knew why. Braces kept falling off. Arch bars failed. I chipped all my teeth. A shift that should take five years happened to me in months.

That was just the start of a nightmare I never woke up from.

Since then, I’ve had 23 surgeries, developed 10 chronic illnesses with no cure, and been told over and over that my case is so rare no one knows why I’m in this much pain. I’ve tried every treatment, every medication, so many specialists. I’ve cried in OR rooms, in hospital beds, and alone at 3 a.m. when the pain was too much. No one should have to go through this.

My jaw prosthetic took eight months to build. On New Year’s, I woke up in the ICU after a 15-hour surgery, expecting to go home in a week. Instead, I spent 130+ days in the hospital, had 17 surgeries at BSW, and now have more than 40 doctors trying to figure out a pain condition no one understands.

I’m pain-med resistant. Meds that should knock people out for hours don’t even touch my pain. I haven’t slept more than 2–3 hours a night since December’24. I look fine on the outside, but I’m invisibly ill, getting sicker every day, with no relief and no clear answers.

I’m 17, and this illness has taken everything. school, sports, sleep, a normal life. Even the one surgeon who was supposed to fix me said he’s done all he can. Now Clinics and surgeons around the world are researching my case, hoping to understand what no one else can.

I didn’t choose any of this. I just have to survive it. Some days I almost gave up, but I’ve learned that if I let the darkness win, the pain wins too. So I smile. Not because I’m okay, but because I’m stronger than what’s destroying me.

I’m in more pain than ever. Still getting sicker. Still fighting a battle no one sees.

But I am not giving up.

Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.