What happened, in the order it happened. From my first seizure in Hong Kong at thirteen, to the move to Perth that finally got me a diagnosis.
A note from me. These are my own words. If any of it sounds familiar — the dismissals, the tests that found nothing, the years spent looking for someone who’d listen — I’m sorry. You’re not alone.
I was thirteen, in seventh grade, and living in Hong Kong when I had my first seizure. I was at school, and I had just won a piggyback race — two people on my back — when I started to shake. I didn't think anything of it. But when it carried on into my next lesson, I was sent to the nurse, and then sent home.
That night, when it happened again, I was taken to the hospital. And that's where the tests began.
There were blood tests every day — which, for someone terrified of needles, was not ideal. There were MRIs, heart scans, brain scans, more than once. There was poking and prodding, and not much in the way of answers.
When the hospital kept finding nothing and kept testing anyway, my mum decided enough was enough. She brought me home and started looking for specialists in Australia.
While we waited to get help in Australia and tried to manage things in Hong Kong, I attempted to go to school every day. But it wasn't safe for me to be out on my own, and the school didn't really know what to do with me.
Eventually, Mum decided she and I would fly to Perth to look for answers there. So off we went — leaving my younger sisters and my dad behind — chasing a diagnosis.
Spoiler: the hospitals in Perth didn't help either. Instead, they told me there was nothing they could do, and they sent me home.
That's the thing about FND. Nobody knows how to help. And almost nobody wants to be the one to diagnose it.
After all the begging and being turned away, my mum went online and tried to find someone — anyone — who actually understood. And, surprisingly, she did.
That's how I got in with Vance Locke, an FND specialist who helped me get diagnosed and start learning how to live with it. To this day, I still have seizures. But they're becoming less and less frequent.
Once my seizures calmed down a little, we went back to Hong Kong, and I tried school again. But the seizures were still too unpredictable, and I still couldn't really go.
That's when my parents made the call to move us to Perth, so I could attend an alternative school and get the support I actually needed. It meant leaving my dad behind — he had to stay for work — and uprooting my sisters, who came with us.
Naturally, it caused fights. Lots of them. And blame.
But it wasn't my fault. And it's not yours either.
“It wasn’t my fault. And it’s not yours either.”
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