What Do You Do?

Someone asks. At a conference, at a dinner, at the school gate. Simple question. Four words.

I take a breath. Not a long one — I don't have that kind of energy. Just enough to buy a second.

"Um. It's complicated."

They laugh. They think I'm being modest.

I'm not.

Here's the thing: I'm not a speaker who also writes and also runs ventures. I'm not someone with five separate careers that happen to overlap. There's no "day job" where I do one thing and a "passion project" where I do another. It's not additive.

It's all one.

I spent seven years in bed before I figured out what was wrong with me. A doctor told me at 25 that I'd never walk again. I got out of that bed anyway. I rebuilt myself. And in that rebuilding, I learned something specific: there's no separation between who I am and what I do. The bed didn't create a before-and-after where I went from sick person to entrepreneur. The bed is the entrepreneurship. The illness is the knowledge. The constraint is the design.

So when you ask me what I do —

Am I a speaker? Yes. I've spoken in 27 countries. But not because I'm "good at presenting." I'm a speaker because I learned how to name things that were previously unsayable. Medical gaslighting. The spoonie tax. The way the healthcare system breaks people. I speak because I have to. Because patients are being dismissed by doctors and they need words for it.

Am I an author? Seven books. Another one coming. But I'm not a writer first who happens to care about chronic illness. I'm a chronically ill person who learned that language is infrastructure. That naming something makes it real. That if you can say it, you can deal with it.

Am I an entrepreneur? I've founded eight organisations from my bed with 1% energy. Spooniversity. Spoons.world. Denialbuster. Others. But I didn't become an entrepreneur despite my illness. The illness taught me how to build things that actually work within limitation. How to design for constraint instead of pretending it doesn't exist.

The speaker, the author, the entrepreneur — they're the same person doing the same work. Looking at a broken system. Naming what's broken. Building something better from within the constraint.

There's a word for that. It's called patient advocacy. But even that's too small for what I mean.

Because here's what ties it all together: I'm here to create a shift in how chronic patients perceive themselves. AND in how the medical world perceives them. AND in how society perceives them. That's not a mission statement. That's the only reason I do any of this.

The speaking serves that. The writing serves that. The building serves that. They're not separate. They're expressions of the same work.

So when people ask me what I do, and I take that breath and say "it's complicated" — I'm not being evasive. I'm being honest. The complication is structural. It's not about having too many projects. It's about all the projects being one project.

Here's my real question back to you: When you introduced yourself, did you feel like you had to split yourself into categories? Did you have to choose between the speaker-you and the builder-you and the advocate-you? Or did you get to be whole?

Because that's what I'm trying to build. A world where chronically ill people don't have to fragment themselves to fit into the boxes the world provides. Where one person can be all the things they are, and none of it cancels anything else out.

That's the work.