I was 32 when I found out I had sickle cell disease. Until then, I’d been having “symptoms” — pain episodes that would come and go, fatigue that I blamed on work, and a vague sense that something wasn’t right. But I didn’t have a name for it.
The diagnosis came after a particularly bad episode. I was in the ER, and the doctor asked me if I’d ever been tested for sickle cell. I said no. I was a healthy adult — why would I have a childhood disease?
But that’s the thing about sickle cell. It’s often thought of as a childhood condition, but adults live with it too. Many of us are diagnosed late, especially if we don’t fit the profile of the “typical” patient.
The diagnosis was a shock, but in some ways, it was a relief. I finally had an answer. All those symptoms that I’d been explaining away had a name.
The hard part came next. I had to figure out what it meant to live with sickle cell. I had to learn about pain management, about hydration, about the things I needed to do differently. I had to figure out how to tell people — my boss, my friends, my family — without being seen as fragile or broken.
I’m still figuring it out. But I’ve learned that I’m not alone. There are so many people who understand what it’s like to navigate this disease, to advocate for yourself in a healthcare system that doesn’t always listen, to find a way to live fully despite the challenges.
That’s why I’m sharing this. Because if there’s someone out there who’s where I was — struggling with symptoms without a name, or struggling with the weight of a diagnosis — I want them to know that they’re not alone.
Have a story of your own to share?