22/09/2026
Posting the many faces of Narcolepsy on World Narcolepsy Day which is awkward enough but it’s important to show that this condition isn’t what people think. Some days you put on makeup, other days you struggle to leave bed, sometimes you experience both in one day.
This year has been a rollercoaster - I’m never gonna have a picture perfect life but I have learned some important lessons:
Narcolepsy has changed almost every part of my life — my career, my relationship with productivity, the way I use my energy, and ultimately the direction I thought my life would take.
But some really lovely things have grown from those changes too. Recently I had the opportunity to speak at FEM’s Harvest of Change thisisfem_ sharing some of my story and talking about what it has meant to navigate a chronic health diagnosis and allow it to change the direction of my life.
And one of those changes has been creating Day Time Notes — something that started because conventional planners never really worked for me.
When your energy can change from one hour to the next, a perfectly planned to-do list doesn’t always survive the day. So I started thinking differently: What do I actually have the energy for today? What really needs done? And what can wait?
I’m still figuring a lot of this out. But I’ve stopped believing that living well with narcolepsy means becoming better at pretending I don’t have it.
For me, it’s becoming about building a life that makes room for it. That applies to how I think about it and how I talk about it around others too. I’m allowed to have big dreams but build them in a way that won’t put me back in a dark place. That makes some people uncomfortable. I’ve learned that the very hard way. Never dilute yourself into a version of yourself that insecure people can tolerate easier
So on World Narcolepsy Day, I’m thinking about everyone who’s still waiting for answers, everyone newly diagnosed, and everyone who’s had to rethink what work, productivity, success or even their future looks like.
Your life doesn’t have to look conventional to be meaningful. 💙
Happy World Narcolepsy Day.
