This is bigger than me

I didn’t share this straight away.

Not because I wasn’t proud — but because I needed to understand why it mattered.

Last week, the Vasculitis Foundation published my story. Not just my diagnosis, but the unseen battle — the guilt, the stigma, the shame, the misdiagnosis, and the fight to be believed.

Before sharing it anywhere, I stepped back. No tags. No links. No promotion.

I wanted to see who reached out organically.

* Who felt seen.

* Who felt heard.

And the response has been overwhelming — not from algorithms, but from patients, families, carers, and clinicians who get it.

This was never about me.

* It’s about the people told “you don’t look sick”.

* The families carrying it quietly.

* The professionals desperate for better tools.

If one person reads this and feels less alone — then this matters.

Thank you to the Vasculitis Foundation for telling this story with care, integrity and humanity. And thank you to Nina for your understanding and support while working on this article. 👍