In a new article published in Breathe, an ERS publication, Clive and Sue share their journey living with pulmonary fibrosis (PF) and the challenges it brings. Following Clive’s passing, Sue speaks with ELF about continuing their story, raising awareness and carrying on Clive’s legacy through advocacy and community support.
Writing the editorial gave us an opportunity to share Clive’s journey with Pulmonary Fibrosis (PF) and the daily challenges it brings. Clive also wanted people to know that even with a terminal illness, you can still live your life.
Sharing our story, explaining what it is like to have PF and what it is like to care for someone with it, was deeply important to both of us. We have always felt that PF is not widely understood. Unless you have it, live with it or work with it, you are unlikely to know much about it. And even then, not everyone fully grasps the day-to-day impact.
We hope that by speaking openly, others might gain a better understanding and perhaps find something in our experience that helps them cope too.
Sharing stories like Clive’s matters because many people feel completely alone after their diagnosis. Often, this is because they had never heard of PF before and do not know where to turn to for support.
As someone who supported Clive throughout his illness, I know how important it is to feel connected and understood. I fell in love with Clive in 1993 and will love him forever. Watching my strong, fearless husband suffer was heartbreaking, but I cared for him every step of the way. Though he did less over time, he was still the same man I married. PF did not define him; it only changed how we did things. We talked about everything and laughed every day. Clive always said laughter is the best medicine. It does not cure but it makes the days easier.
When Clive and I started the Tameside Pulmonary Fibrosis Support Group in 2018, we had no idea how much it would change our lives. Before, the only group we could attend was at Wythenshawe Hospital (UK), which was not easy to get to and they only met every other month. When we attended this group, Clive spoke to someone from the UK-based organisation, Action for Pulmonary Fibrosis (APF), who encouraged us to set up something local. Clive wanted to make sure people in our area had easier access to support, and I agreed.
After weeks of delivering posters to doctors’ surgeries, libraries, clinics, hospitals and anywhere with a noticeboard, we held our first meeting at a local community fire station, using their community room free of charge. The group grew quickly. Within 6 months we needed a bigger room and soon after that we moved to the largest hall at our new venue. In 2020, the pandemic meant we had to switch to online meetings which opened new doors and people from Germany, Zambia, Ireland and the US began to join our meetings.
In the 7 years since the group began, we have lost 64 members, including my darling husband, Clive. But the support group has brought incredible people into our lives. We have several volunteers who raise awareness, apply for funding and support members in practical ways, including helping with financial advice. They do all of this around their own busy lives. These people have become dear friends, and their support since Clive’s health declined, and especially since he passed away in March 2025, has meant so much to me and my family.
People often say the group is more than support. It is a lifeline. They no longer feel alone and know someone is always there to talk to. It has become like a family and that sense of community means everything.
(pictured: Clive and Sue with group volunteers at the TPFSG 6th Anniversary in April 2024.)
It took me a long time to realise that, as well as being Clive’s wife, I was also his carer. It is not something we tend to accept easily. I never wanted my role to become more than just being his wife. Caring can be lonely and frightening, especially in the later stages of illness. You constantly question whether you are doing enough and when someone is vulnerable to infection, you give up much of your own life to keep them safe. It is incredibly isolating. That was my experience for the last 5 years.
I am grateful for family and the wonderful friends we made through our support group, though I have always felt more of a listener than a talker.
One thing I wish people understood more is how much carers carry, albeit quietly. Doctors especially need to check in. Carers often put themselves last, behind the person they support, their family and sometimes even the dog.
From the start, Clive and I made it clear that we wanted to face everything together and thankfully his consultant fully supported that. I was included in every conversation about his illness and care, which made a huge difference.
But not everyone has this experience. Many carers feel left out and unsure, relying on their loved one to pass on important information. The best way to support a carer is to involve them and keep them informed. Most want to be part of it so they can prepare and give the best care possible.
A diagnosis of pulmonary fibrosis is devastating. When Clive’s condition progressed in 2018, we felt overwhelmed and very alone. Even with a supportive consultant, the reality hits hard once you are home.
We wanted to understand as much as we could, which led us to start the Tameside PF Support Group. It helped others, but it helped us too.
Our advice is to reach out to support groups, to charities like APF and to others living with PF. You will find connection, guidance and strength. And above all, do not lose hope. Clive stayed active for as long as he could and it made a difference. He fought with courage every step of the way.
In 2019, Clive came up with the idea of “Around the World with TPFSG” to raise awareness of Pulmonary Fibrosis. People take a photo with our support group poster on holiday, a day out or even in their garden and send it to us with the location. Some use printed posters, others show it on their phones. It can be fun or serious.
So far, we have received around 1,700 photos from friends, family, former colleagues, celebrities and strangers. We share them on social media and at events to help people learn about PF. Clive dreamed of getting our poster to the International Space Station. We have not managed that yet but in 2023, it did travel around the moon aboard the Artemis rocket.
We will continue this in Clive’s memory. If anyone would like a poster, they can email us at tpfsg1@gmail.com.
Our goal remains the same: to raise awareness so that when someone says they have PF, they are not met with blank looks. Everyone should know what it is.
