For most of my life, I thought I was alone.
I’m now in my early sixties, and until a few years ago I had never knowingly met another person with Congenital Melanocytic Naevus (CMN). I didn’t even know what my skin condition was called. It was simply something I had lived with for more than sixty years.
That changed when I discovered Caring Matters Now through the How Do You See Me Now? exhibition. Finding out there were other people like me was both comforting and shocking. It made me realise how much CMN had shaped my life without me ever properly understanding it.
Life was busy, then Covid arrived, and it wasn’t until a CMN adult darts event that I finally met other adults with CMN in person. That evening meant far more to me than I expected. For the first time, I was surrounded by people who understood without explanation. I don’t think I had fully come to terms with my skin until then, and the experience helped me enormously.
Looking back, CMN influenced many parts of my life. My way of coping was to cover up. I chose hobbies such as motorcycle trials and later cycling, where protective clothing was normal. Over time, covering up became a habit. I avoided situations where people might see my skin and often kept potential relationships at a distance. At the time I thought I was just being cautious, but now I can see how much space CMN occupied in my life.
Despite that, I’ve had a wonderful life. I’ve travelled widely, made great friends around the world and taken on some incredible adventures. I’ve travelled to Canada to race the BC Bike Race, a six-day mountain bike stage race through British Columbia several times. I also raced the Transylvania Epic in Pennsylvania, another unforgettable experience. Sport has always given me confidence, whether through mountain biking, motorcycle trials, long-distance walking or charity challenges.
These days I try to raise awareness wherever I can. I wear my Caring Matters Now cap and T-shirts, put stickers on my bikes and talk about CMN when people ask. Years ago, I would have avoided those conversations completely.
One of the greatest things Caring Matters Now provides is community. The adult gatherings, London meet-ups, Zoom calls and conferences have all helped me in different ways. Small groups suit me best, and I often leave thinking, “That’s the most I’ve ever talked about my CMN.” Every time, it helps.
Another positive step has been taking part in CMN research. I have participated in studies with Great Ormond Street Hospital (GOSH) and the Centre for Appearance Research, including discussions around relationships, intimacy and living with CMN as an adult. For someone who spent so many years not talking about my skin, being able to contribute to research has felt important. I’m keen to continue supporting any projects that help improve understanding of CMN and shape better care for others, both now and in the future.
One particularly special moment came recently when I received copies of Didi, the Wolf & the Starry Tattoos. Seeing a character inspired by me in a children’s storybook was a huge privilege and something I never imagined would happen. It made me smile when I spotted my bike in the illustrations, and it even looks like I’m holding a water bottle. Sharing the book with friends has been just as rewarding. They loved it and knowing that copies are being taken into schools to help raise awareness of CMN feels incredibly meaningful. After spending so many years not knowing anyone else with the condition, it’s wonderful to think that young people growing up with CMN will be able to see themselves represented in stories like this.
This September, I plan to walk the Thames Bridges Trek in London as part of the Bare Your Birthmark initiative. For someone that’s covered up and hidden themselves… wandering along the Thames wearing a pink t shirt will be interesting!
If I had known about my condition growing up, my life might have been very different. Not necessarily better, just different. Today’s children and young people with CMN have access to information, support and understanding from the beginning, which is incredibly valuable.
I still have questions about my skin, and I still have mixed feelings when people talk about treatments. CMN has been part of me for more than sixty years and has helped shape the person I am today.
What I do know is this: finding Caring Matters Now changed my life. The exhibition showed me I wasn’t alone. The darts evening showed me I belonged. And for the first time, I’m comfortable enough to tell my story.
