21/09/2026
“It felt like I’d been hit by a train or a car.”
Vikae was ten when she tried to explain the pain in her legs.
Growing pains, she was told.
Years later, hypermobile Ehlers-Danlos syndrome (hEDS), POTS, MCAS and bipolar II gave language to experiences that had never quite made sense.
But having the language does not always settle the argument.
Even with diagnoses, invisible disability can make you question your own experience.
For VÏKAE, getting a medical alert bracelet felt strangely validating.
“If you qualify for one of these, you’ve clearly got some problem.”
Because the questions still come.
“Surely everyone is in pain a little bit.”
“Maybe I’m just getting older.”
“Am I being dramatic?”
When so much of what affects you leaves no visible mark, proof can become strangely precious. And as other people demand it of you, you begin to demand it of yourself.
That same self-doubt followed VÏKAE into work.
She moved through hospitality, teaching and corporate building management. There were jobs she could do, technically. But eventually, she says, “It was breaking my body every single day.”
Around that time, a friend gifted her an orchid.
Not a literal one. An idea.
She told VÏKAE she was like an orchid. Beautiful, powerful, a presence, but something that needed the right conditions to thrive.
It shifted something. Maybe VÏKAE wasn’t the one who needed to change. Maybe the environment was.
Today, VÏKAE is a Community Facilitator at Aspirations Makatoa in Onehunga, a creative hub for disabled people to explore, create and connect.
When asked what her experience of disability brings to that work, her first answer is:
“For a long time, nothing.”
But then she keeps talking.
About advocacy. About believing someone when they say they are tired, sore or not okay. About saying “I’m sorry to hear that” and actually meaning it.
And about music.
At high school, a music teacher gave VÏKAE somewhere to go when the classroom was too much.
When asked what music has given her, she cries.
“Home.”
Now, through Easy Beats, the music sessions she facilitates at Aspirations, she gets to help create that same feeling for other people.
A place to move. Stim. Laugh. Play. Communicate in the ways that belong to them.
Somewhere they can “just be completely themselves.”
VÏKAE calls it “magic”.
Living with disability can make you fluent in everything it costs.
It can take longer to realise what has grown around it.
VÏKAE’s first answer was nothing.
By the end of her story, that answer feels much harder to hold onto.
