Creating Positives from Negatives: The Power of Sharing Your Lived Experience

“For many people, 14 February is only known as Valentines Day. A day that can be full of such joy for many (congrats on the recent engagement if that’s you!), or the anticipation of a trip to the supermarket for cheap choccies on the 15^th. For me, the 14^th holds a different meaning as it’s also Congenital Heart Defect Awareness Day.
 
When I was born, my adulthood wasn’t a guarantee. I was diagnosed in the womb with a rare Congenital Heart Defect (CHD) that, in essence, left me with only half of my heart working. As part of my treatment plan, I’ve undergone about 5 open heart surgeries over the course of my life, the first when I was just 3 days old. As a result of these surgeries, I have what is known as a Fontan circulation¹. In simple terms, this means that my blood only travels through the left half of my heart, bypassing the right. Thanks to the most extraordinary, innovative care, I have not only reached adulthood, but I am able to live a happy fulfilling life. With that life, I have chosen to work at Mary Frances Trust (MFT).
 
One of the things I was introduced to upon joining MFT was the concept of co-production. Whilst hard to define, co-production is essentially the process of working not just for the people we’re supporting, but actively with them. As an administrator, I have the absolute pleasure to be invited to support with co-production meetings. I felt so empowered by the voices of our Advisory Group and so inspired by the work of the Surrey Mental Health Co-Production Network, that I started looking inwards, wondering if anyone was interested in my lived experience. Were people wanting to hear my voice the same way MFT soak their clients’ voices into the very foundations of their services?
 
As anyone with a long-term illness can tell you, the relentlessness of it all can take a toll on your mental health. With the added pressure of facing your mortality at a young age and living through the challenges of life altering medical interventions, it is no surprise that those born with CHD can be up to 5 times more likely to develop a mental condition than the general population² . I was not an exception to that rule and, after my most recent surgery, found myself undergoing a course of Cognitive Behavioural Therapy (CBT) treatment.
 
It was during one of these CBT sessions, when I was speaking about my work at MFT, that my therapist had a brainwave: “Chloé, I think this is going to be the key for you. There will be people out there who want to hear about your experiences.” The thought of having the power to use these negative, scary moments of my life to create positive action filled me with a sense of hope and empowerment I had never associated with my CHD before. So off I went, in search of the people wanting to listen to me, and I was pleasantly surprised to find so many of them!
 
As of this Congenital Heart Defect Awareness Day (2026), I have used my lived experience to support the British Heart Foundation, Oxford Medical School, Heart Research UK, and the European Heart Network. Recently, as part of the Young Hearts Task Force, I was involved in publishing a list of recommendations detailing how government and healthcare systems can better support younger adults living with heart conditions³. Mental health support was recommended multiple times throughout the document.
 
All of this work has given me a new perspective on my health. I still have difficult times that take a lot of strength and support from others to overcome; but I now also feel empowered by it all. Your lived experience is important, valuable, and can do so much to help others. There are so many organisations out there, including MFT, who want to listen to you. With each task I complete, I am filled with so much hope. Not just for me, but for the generation of CHD patients who will come after me. Hopefully their journey will be easier, because someone listened to my voice”.  
 
If you’re interested in learning more about co-production at MFT, the work of our Advisory Group and how you can share your lived experience to strengthen our work, please visit the Co-production section of our website, or contact Megan, MFT Delivery and Strategy Lead: Co-Production and Community Engagement at megan@maryfrancestrust.org.uk or call 01372 375 400.