Jordan’s Story
Five years ago, my life started to change in ways I couldn’t understand.
At first, the symptoms were small and easy for other people to dismiss. Strange sensations, pain, exhaustion, neurological symptoms that didn’t make sense, moments where my body simply didn’t feel like my own anymore. Deep down, I knew something wasn’t right, but every time I tried to explain it, I felt unheard.
I spent years battling to be listened to.
I was constantly dismissed. I was made to feel like I was overreacting, anxious, dramatic, or imagining what was happening to me. Appointment after appointment, I kept searching for answers while my health slowly got worse. I was trapped in a cycle of trying to explain symptoms that even I didn’t fully understand myself.
Then came the massive flare-up.
Everything changed.
My symptoms became impossible to ignore. The seizures, the pain, the exhaustion, the mobility struggles, everything hit me all at once. The life I once knew disappeared almost overnight. I went from trying to hold everything together to suddenly feeling like my entire world had fallen apart.
But what hurt the most wasn’t just the condition itself.
It was the loneliness that followed.
When I came out of the hospital, mentally I was in one of the darkest places I have ever been in. I felt terrified, isolated, confused, and completely lost. A lot of the people I thought would be there for me disappeared. Friends drifted away. Some family members struggled to understand. I felt abandoned during the hardest period of my life.
There were moments where I truly didn’t know how I was going to keep going.
But there were a handful of people who never left my side: my husband, Skye, and my mum and dad, my sister, and my husband’s step parents
Without them, I honestly don’t know where I would be today.
They stood beside me through the seizures, the fear, the hospital visits, the breakdowns, the days when I couldn’t see any future for myself anymore. They carried me through moments where I couldn’t carry myself.
At one point, my GP told me there wasn’t much support out there for FND and suggested I join some Facebook support groups. And while those groups helped me realise I wasn’t alone, I also realised something huge was missing.
People needed more.
People needed a connection.
People needed understanding.
People needed a voice.
That’s when, with the support of my husband, we decided to create FND HBH — Healing • Belonging • Hope.
What started as a small idea during one of the darkest chapters of my life has now grown into something far bigger than me.
FND HBH is not just my voice.
It’s the voice of every person living with FND who feels unheard.
It’s the voice of the people battling symptoms behind closed doors while trying to survive every single day.
It’s the voice of the family members watching their loved ones suffer and feeling helpless.
It’s the voice of young carers who deserve recognition for the strength they show every day.
It’s the voice of children diagnosed with FND whose parents are desperately trying to find support, answers, and understanding.
Every single day I still struggle.
I struggle with the seizures.
I struggle with the pain.
I struggle with the grief of losing the person I used to be.
But despite all of that, I keep fighting.
I fight for the people I love.
I fight for the community we’ve built.
And I fight for every single person living with FND who deserves to know they are not alone.
Because no one should have to go through this condition feeling invisible.
And if sharing my story helps even one person feel seen, heard, or understood — then every painful step of this journey has meant something.