As a company we are privileged to get to know patients and their stories, which help shape our immersive experiences. We asked our Head of Production Bev Bryant about one of her most recent conversations of getting to know Clive, a person living with pulmonary fibrosis and his wife Sue.
When I first met Clive and his lovely wife, Sue, I had no idea that our conversation would leave such a lasting impact on me.
Clive, a warm and engaging man with a great sense of humour, was diagnosed with pulmonary fibrosis (PF) in 2009, a condition I knew very little about and it quickly became apparent, I wasn’t alone.
One of the main things I learned from Clive and Sue’s story is just how invisible and misunderstood pulmonary fibrosis is, sometimes even within the medical community.
When Clive first received his diagnosis, he and Sue had never heard of it before. In fact, Clive told me he asked the doctor if it was the same as Cystic Fibrosis because that he had heard of.
He went on to tell me while he was advised it isn’t the same, he felt he wasn’t given much information about PF at all and had no idea what it meant for his future. The appointment had changed their lives, yet they felt like they were left to navigate the uncertainty largely on their own.
So, what is PF? It’s a chronic and progressive lung disease that causes scarring (fibrosis) of the lung tissue. Over time, this scarring makes it harder for the lungs to function, leading to breathlessness, fatigue, and persistent coughing. There is no cure, and while treatments can slow progression, the disease continues to worsen over time, which will ultimately lead to death.
After hearing this sobering fact, I asked Clive what, in his experience, does he think people need to be most aware of when they think about pulmonary fibrosis?
His reply was that it’s a rare condition which isn’t very well known, and many people assume it’s just another form of asthma or COPD which is a source of frustration.
So much so, that despite the challenges they faced themselves, Clive and Sue have became advocates for the PF community; setting up a patient support group to raise awareness, educate others, and share their story to help people understand what PF really is.
I am a huge believer in the power of patient support groups, having benefitted from them myself and through speaking to other people with rare conditions. I believe the more we talk about these lesser-known diseases, the more likely people are to get diagnosed earlier, receive the right treatment, and feel less alone.
Beyond the medical realities, Clive and Sue’s story is also one of strength, resilience, and love. Despite everything, they continue to find joy in life, appreciate the little moments, and support each other through the ups and downs.
Hearing how they navigate their journey together has been a powerful reminder of how precious our health is and how important it is to stand by the people we love, no matter what life throws our way.
I never expected to learn so much from meeting Clive and Sue, but their story has changed the way I see illness, advocacy, and the simple power of raising awareness. Pulmonary fibrosis may still be an unknown condition to many, but thanks to people like Clive and Sue, I hope that changes.
If you would like to hear more of Clive and Sue’s story, look out for their full interview in the A Life in a Day newsletter.
