Making the invisible visible: why telling stories of our lived experiences with cancer is so important
So life is complicated. How we feel day to day changes subject to what gets thrown at us. Often it can be hard to explain to the outside world how we are feeling. And that experience is heightened when we are unwell.
I’ve been thinking about this in the context of living with cancer.
Some parts of our cancer journeys are more tangible than others. Going into hospital for a course of treatment - that’s easy for the outside world to understand. It’s clear and visible.
But so many parts of our cancer journeys are less visible, especially for those of us undergoing long-term treatment with uncertainty about the future.
So when cancer feels invisible and intangible, it’s not only hard for the outside world to understand, it’s also hard for the person involved. Because it’s like walking around with a heavy and cumbersome piece of luggage that others aren’t able to see.
And that’s where telling stories of our lived experiences with cancer comes into play. When we share our stories about the true and complex nature of our experiences with cancer, then we can make the abstract concrete, we can make the invisible visible. And that way people in our lives get to know how we really feel.
That’s why telling my story of my lived experience with cancer has been so important to me. Since my diagnosis I have shared posts online, presented a one-man show, written a column for a newspaper and featured in a documentary. I have chosen to tell my story in this way not only because I find it cathartic, but so that others might have more empathy and better understanding for living with cancer.
At the start of this year I ran a webinar for the UICC, organisers of World Cancer Day, on how to tell stories of lived experiences with cancer. UICC is looking to change cancer care globally to become more human-centered; they recognise that sharing stories - whether that’s by patients, family members or healthcare professionals - can build empathy and aid understanding, creating the change they want to see. I’m proud to be featured in some of their campaigns: I appeared on digital billboards around the UK, as well as in a photo exhibition by Lake Geneva, for ‘Cancer Turns Your World Upside Down,’ I’m one of twelve people telling my story on social media for their Twelve People, Twelve Cameras Twelve Months campaign; and I appear (blink and you’ll miss it!) in the 2026 World Cancer Day campaign video (watch below).
As I continue to live with prostate cancer and face the ongoing challenges of side effects from the various treatments, answering the ‘how are you?’ question is tough. It's not clear cut.
Often it's not easy to explain how I'm doing, what I'm going through. I don't have a snappy one-liner to tell people that.
One way I’ve been sharing my ongoing, unfinished, complex story is via Instagram Stories. Here I have always shared snippets of my day: a coffee cup and my notepad in a cafe, a pile of autumn leaves, arriving at an office building for a meeting. I don’t over-think these - after all they will disappear in 24 hours - I just upload a photo and a caption. In those daily moments I can share a photo of a doctor’s waiting room or a sign at the hospital. That simple act of documenting and sharing these scraps of my story helps me tell my truth: who I am and what I’m living through.
There’s no big narrative about what’s happening: it just signals to others, this is part of my life today. This is who I am right now…