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Lived Experience & Systems Change · Thoughts

Five Specialists, Zero Conversations With Each Other

· Updated · Madeleine Nicholas

A square infographic on a cream background with four coloured blocks labelled Educate, Manage, Advocate and Explain, connected by dotted curved lines around a central illustration of documents and a magnifying glass. The main message reads, Half the time it's just unpaid labour with a nicer name, followed by, Advocate. Explain. Educate. Manage - before the appointment even starts. Signed Madeleine x lighteningup.com.au.
Half the time, it’s just unpaid labour with a nicer name.
Advocate. Explain. Educate. Manage. All before the appointment even starts.
💚 The invisible work that happens behind the scenes is real work, and it deserves to be recognised.

At one point I had five specialists involved in my care, and not one of them had spoken to another. I was the only person who knew the full picture, and I was the least qualified person in the room to be making sense of it.

Every specialist looks at their own slice with real skill. Nobody’s looking at the whole person underneath all those slices. A medication one doctor prescribes can clash with something another one recommended, and the only safety net catching that is me remembering to mention it, in a ten minute appointment, while also trying to explain everything else going on.

I used to think it was bad luck, a few doctors who just didn’t communicate well. It’s not luck. It’s how the system is built, specialist by specialist, department by department, with nothing connecting them except the person walking between rooms.

I shouldn’t have to be my own care coordinator. That’s a job, and I never applied for it.

Have you ever had to be the only link between specialists who were meant to be working together?

If you’ve ever felt like the only one holding your own care together, Self Advocacy Unleashed teaches you how to make the system talk to itself, not just to you. Join the waitlist, link in bio.

Madeleine x