Advocating for Change: My Experience Speaking at the Health Authority

I never thought of myself as an advocate. I’m not a politician or a policy expert. I’m just someone with sickle cell disease who was tired of being ignored.

It started with a conversation. Someone from BHASNet reached out and asked if I’d be willing to speak at a meeting with the health authority. They wanted to hear from patients about the barriers they face in accessing care.

I said yes, even though I was nervous. I prepared what I wanted to say. I talked about the ER visits, the long waits, the times I’d been dismissed by doctors who didn’t understand my pain. I talked about the fatigue that people don’t see, the hidden work of managing a chronic condition.

I didn’t know if anyone would listen. But they did. The people in that room were paying attention. They asked follow-up questions. They seemed genuinely interested in understanding what patients go through.

It was a small step, but it felt significant. It felt like someone was finally listening. And it made me realize that my voice matters — not because I’m an expert, but because I’m living it.

I’m not done advocating. There’s a lot more work to do. But I know now that speaking up is worth it. Even if it’s uncomfortable, even if it feels small. It matters.