Patients are experts too.
Written after a lot of frustration being a patient keynote speaker. We are experts too. Pay us, treat us, and put us in decision-making positions like one.
Of living experience.
Of managing on low resources under conditions of uncertainty.
Of navigating complex systems while running on substantially less energy than healthy people ever have to account for.
Of our own illnesses.
Of advocating.
Of building communities and bridges.
Of falling and getting up, over and over again.
Of hope.
We are healthcare.
Pay us as experts.
Treat us as experts.
Put us in decision-making positions.
This was written after a lot of frustration being a patient keynote speaker.
When you invite a patient to speak, consult, or participate, it isn't charity. It's an honor to have that expertise in the room, an obligation to seek it out, and the right thing to do. Don't build a pity slot for the patient speaker. Embrace what we actually know.
*Want to change healthcare? Appoint a Patient in Residence in your organization.*
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Honest writing on chronic illness, patient advocacy, and showing up.