I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, yet something inside me kept whispering that this wasn’t the full story. After years of fighting for answers, I still believed that one day a doctor would finally listen — really listen — to what I had been trying to say. I had no idea how fragmented healthcare could be. I truly thought doctors regularly consulted one another, especially across different specialties. My only reference for hospital life came from romanticised medical TV shows. How could I have known what the reality looked like?

When starting this blog, there is one story I must share first — the story that shaped my voice, my mission, and my determination to advocate for others living with Ehlers-Danlos Syndrome. It begins with my long journey to a diagnosis.