Michelle's story

I started fading young.  Fresh into puberty.

Not in the poetic sense — no delicate drifting into dreamland. Just... disappearing. Mentally checked out. Physically present. Eyes open, brain offline. A kid who couldn’t keep up, couldn’t stay tuned in, always half a step out of sync.

Life was already hard, and the reasons were real. Poverty, stress, generational trauma, teenage-trying-to-survive stuff. But looking back now, there was another layer under all of it.

I remember my mum — always tired, always on the edge of sleep. She once said, “Just the narcolepsy.” I didn’t know what that was. Thought maybe it was a joke. I wish I’d asked. I wish I’d understood.

I understand now.

I had my first child before I was even legally an adult. 

And straight away, people rushed in with reassurances.
“All mums are tired!”
“You’ve got baby brain, that’s normal!”
“You’ll feel better once they sleep through the night!”

But I didn’t. Not ever.

And this wasn’t normal tired.

This was body-on-fire, brain-in-cement, sleep-debt-so-deep-it-echoes tired. I’d sit on the floor next to the baby and disappear. I’d fight to stay conscious during nappy changes. I’d lose whole afternoons to something between sleep and shame.

He was working full-time and still coming home to cook, clean, and handle the mental load. People judged him for it. Loudly.

“What’s she doing all day?”
“Must be nice to stay home while your husband works himself into the ground.”
“Some women just aren’t cut out for motherhood.”

They couldn’t see how hard I was trying — how I’d cry over a sink full of dishes I wanted to do but couldn’t. They just saw failure. Laziness. Weakness.
And eventually, I saw that too.

The symptoms multiplied as the years went on.

Sleep paralysis. Dream-hallucinations. Sudden emotional collapses. I couldn’t explain them, so I didn’t. I just adapted. Hid it. Pushed through.

Doctors didn’t help. I was misdiagnosed over and over:

• Depression (of course — I was deeply miserable)
• Chronic fatigue
• IBS (because I once said stress made me feel sick)

I was a medical mystery nobody seemed that curious about.

Still — I never stopped trying to make sense of it. Some part of me kept hoping there was an answer. Something I hadn’t found yet.

The world treated me like I was lazy.

I treated myself worse.

I’d fade mid-conversation, mid-task, mid-life. And the people around me — colleagues, friends, even family — slowly stopped expecting anything of me.

And honestly? So did I.

No matter how hard I tried, I couldn’t beat the sleep. Couldn’t overcome the fog. Couldn’t match the world’s expectations of who I should be.

But somewhere inside me, that old pilot light kept burning. Low and flickering. But not out.

Eventually I started to piece it together. I noticed that some environments were gentler than others. Being a full-time at-home mum was a chaotic, high-stimulation mess of triggers — even though I loved my children.

In my late 30s I discovered working with structure, breaks, quiet routines — gave me a glimpse of stability. I could plan rest. I could pace myself. It wasn’t perfect, but it gave me a little breathing room. Enough to carry on.

Then I hit my early 40s and made a big, brave choice: I went back to uni.

I thought, “Maybe this is it. Maybe now’s my time.”

And for a while, it was — until it wasn’t.

University — with its marathon lectures, constant stimulation, and no real space for adaptation — sent my symptoms into overdrive. I couldn’t keep up. Not because I didn’t want to, but because my brain simply wouldn’t let me. I dropped out. Again.

Going back to work didn’t help much either. I was crashing harder now. I could barely hold meaningful wakefulness for more than 45 minutes.

Then — finally — I got diagnosed.

Narcolepsy Type 1. With cataplexy — the symptom that’s basically a signature of the condition.

It should’ve been obvious. My symptoms were textbook. But the world’s understanding of narcolepsy is so limited, so myth-soaked, that I slipped through the cracks. For years. Decades.

When I got that diagnosis, I felt something huge crack open.
Not fear. Not even sadness.
Relief.

Relief that it wasn’t my fault. That there was a name for this. That I wasn’t imagining it. That I might — finally — be able to do something about it.

Because with a name came possibility.
Maybe I could reduce the symptoms.
Maybe I could rebuild some of the life I thought I’d lost.
Maybe it wasn’t too late.

But the truth?

The diagnosis didn’t undo the internal narrative I’d lived with for years.

All that shame and self-blame — it doesn’t vanish overnight. I still catch myself being cruel to myself for forgetting things, for zoning out, for not “getting it together.”

There’s a grief that lingers. A running tally in my head of all the missed opportunities, lost relationships, unexplored versions of myself I’ll never meet. I still default to ridicule when I fail, even now.

I know better. But I haven’t always learned how to feel that knowing in my bones yet. I’m working on it.

What I do know is this:

My symptoms weren’t subtle. I had the classic signs of narcolepsy, including cataplexy — the one that’s unique to us.

And still, it took decades. Because this condition is so poorly understood, and so rarely recognised, that even the obvious can go unseen.

I know what happened to me isn’t unique. I know there are others still wandering through life half-awake, full of shame, thinking they’re broken — when really, they just haven’t been seen yet.

But I don’t know how many of us there are.
No one does.

Because the story of how people with narcolepsy are faring — here in Aotearoa, or globally — is still mostly a mystery. And until we collect the data, it will stay that way.

I did eventually find the energy to start a not-for-profit to improve the story for folks like me and we joined the Rare Disorders NZ Collective to link arms on the strategies and supports that will support not just narcolepsy, but all rare disorders in Aotearoa.

Because we deserve to be counted.
Because knowing changes everything.
Because if I’d had even one voice saying, “I see you, and this is real,” it might’ve changed everything sooner.

I’m still tired. But now I’m awake in a different way.
And I’m not going back to sleep.