Prisca Githuka, Cancer Advocate, Founder of Pink Hearts Cancer Support Foundation, shared a post by on LinkedIn:
“Lived, Learned, Unmissable: ‘They told me my experience wasn’t enough. They were wrong.‘
I’ve sat in rooms where lived experience was treated as a liability instead of an asset. Where people said quietly or not so quietly…..
‘You don’t understand policy. Your story is powerful, but it’s not enough.’
Let me be clear: lived experience is already a win. But when you add learned experience-education, training and strategy, you create something far more formidable. Something systems can’t afford to ignore.
Many of us didn’t stop at surviving. We studied. We worked. We trained.
We took advantage of advocacy trainings, cancer leadership programs, policy fellowships and community organizing spaces offered by organizations that understood one thing clearly: experience matters but capacity changes outcomes.
We learned how advocacy works, how policy cycles move, how governance fails and where systems consistently miss the people they are meant to serve.
Our voices are not just stories. They are informed, deliberate and strategic.
To those with lived experience: don’t let anyone convince you that your role ends with your story.
If trainings exist, take them. If fellowships are offered, apply. If leadership spaces open, walk in. Not to prove your worth, but to sharpen your power.
Because when lived and learned experience meet, you become an advocate who sees what others overlook, asks the questions that make rooms uncomfortable, and pushes for solutions that are actually people-centered.
- We are not here to be tokens.
- We are not here to nod politely.
- We are here to shape decisions that affect real lives.
If you design policies, fund programs, or make decisions that affect community, stop treating lived experience as optional. Bring us in early. Give us real authority. Fund our participation. Measure success by whether your policies reflect the realities of the people who live them every day.
Ignore us at your own peril. Because when lived experience is paired with learned experience, we are not just voices at the table, we are expertise you cannot overlook.
Surviving showed me where the gaps are; learning gave me the tools to help close them.”
Other articles featuring Prisca Githuka on OncoDaily.
