June 08, 2026
This Carers Week, we’re sharing the stories of Marie, Nicholas and Judi, who have first-hand experience of supporting a loved one with pulmonary fibrosis.
Marie’s story
Could you tell us a little about yourself and who you cared for?
I’m Marie and I cared for my husband Mark who was diagnosed with mild pulmonary fibrosis in June 2023 and passed away in May 2024, aged 54.
Mark was the most chilled-out person you’d be lucky to meet. He loved a laugh and enjoyed playing golf and going on as many holidays as possible!
Mark started to show very mild symptoms of intermittent tight chest and infrequently feeling like he was trying to catch a breath.
When we first saw the consultant in June 2023, Mark was given the diagnosis of mild pulmonary fibrosis and we were advised another chest scan was needed, but no further treatment was needed and there was no other information shared about the condition.
Mark had a chest infection in March 2024 which didn’t respond to antibiotics and later turned into double pneumonia. During that time, I cared for Mark without understanding his condition and just tried to make adjustments to our normal lives and routines to accommodate his increasing needs.
It was only when Mark was admitted to hospital on 22 April 2024 that we understood the severity of Mark’s condition; we had to rapidly learn about pulmonary fibrosis, understand there were no treatments that would improve Mark’s condition, and we had to face the fact that Mark was going to lose his life due to the condition. Mark passed away on 8 May 2024.
How did you first find out about Action for Pulmonary Fibrosis?
Unfortunately, I found Action for Pulmonary Fibrosis after Mark passed away. I was looking for any information to help me understand the condition, what support he should have been given from the point of diagnosis and, on reflection, I now also recognise I was looking for support with my grief as I felt in a state of shock from how things had changed so quickly.
What kind of support helped you most during your caring journey?
I wasn’t aware of the support Action for Pulmonary Fibrosis offered before losing Mark, so we struggled at home trying to cope with the impacts that pulmonary fibrosis was having on Mark. The support provided by Action for Pulmonary Fibrosis is amazing, from the Support Line and the website to the webinars and carer groups. Being able to call on people who really understand the condition and who can help with practical and emotional support is amazing.
What were some of the biggest challenges you faced as a carer?
Anyone who becomes a carer will tell you it’s an honour to look after someone you love; if they were honest, they would also tell you how terrifying it is and how tiring it can become.
The lack of information from the point of diagnosis was a huge setback for us because we just didn’t understand the severity of the condition, didn’t have any support in place for when Mark’s condition worsened, and we second-guessed ourselves as we didn’t want to make a fuss but our instincts told us there was something serious happening.
We faced a lack of understanding with our local GP because they also didn’t understand the condition. Mark was treated as a “normal” patient when he got a chest infection, waiting a week at a time for an appointment rather than being prioritised due to having a life-limiting lung condition. We created our own breathing techniques to calm Mark’s breathlessness when he was really struggling for breath.
What advice would you give to other carers supporting someone with pulmonary fibrosis?
Ask questions: Don’t be afraid to ask for help, information or support, and challenge when you can see a change in the person you are caring for because you know them better than anyone else.
Go easy on yourself: Taking responsibility for a loved ones caring is massive, you have to separate practical things from emotions all the time, but the emotions don’t disappear; accept help, take a break and don’t feel guilty when you do.
Talk about the hard stuff: It’s a conversation no one wants to have, but it’s important to discuss some of the harder things that pulmonary fibrosis brings. Once you’ve had the conversation, you don’t have to keep having it repeatedly, but having the difficult conversations at an earlier time helps prepare you both for when the condition progresses and decisions become more urgent.
Is there anything you wish more people understood about being a carer?
I think of it as an expression of love when you care for your partner or family member. When you are caring for someone, people around you may see them differently; they might see a patient and a carer, or an ill person and someone who is trying to help them. I think it's important that people remember who you both are, you’re still the people you’ve always been.
Carers need caring for too, and that doesn’t stop when someone goes into hospital, or a hospice or passes away; the loss is heavy and they will need you even more when they stop caring for their loved one.
Nicholas’ story
Can you tell us a little about yourself and who you care for?
I’m Nicholas and care for my father, who was diagnosed with pulmonary fibrosis in February 2025.
Before his diagnosis, my dad had problems with his breathing, a persistent cough and generally didn’t feel right. After several tests and appointments, he was referred to a hospital in London, where he was diagnosed with pulmonary fibrosis.
At the time, none of us really knew what pulmonary fibrosis was. We had to learn about the condition ourselves by reading letters and searching online. It’s not something many people have heard of compared to conditions like COPD or asthma.
How did you first find out about Action for Pulmonary Fibrosis?
I was searching online for information and support groups. Because I’m visually impaired myself, I already understood how important support organisations can be. I found Action for Pulmonary Fibrosis (APF) online and started using the website and Support Line for information and advice.
APF is not just about supporting people with pulmonary fibrosis; the charity supports the carer as well. As a carer, you've got to put your hand up and say, “I need help and support”, because the sooner you can get support, the sooner you can get the information you need, and the easier it will become.
What kind of support has helped you most on your caring journey?
The biggest support has been the APF Support Line. The Support Team helped me understand that everyone’s journey with pulmonary fibrosis is different and that there are no fixed timelines. They also helped me learn what to expect, what support and benefits might be available and how to deal with challenges as they arise.
Meeting other people affected by the condition and hearing their experiences has also been really valuable.
What are some of the biggest challenges you face as a carer?
One of the biggest changes is that I’ll be moving in with my parents to help care for them both. That will be a big adjustment after living independently for a long time. We've got different lifestyles and we do things differently, but I love them and I want to support them, so I'm more than happy to do that.
Emotionally, it’s also difficult seeing my dad gradually become more tired and less able to do things and helping him accept support when he needs it.
What advice would you give to other carers supporting someone with pulmonary fibrosis?
Every person’s experience with pulmonary fibrosis is different. There’s no ‘one size fits all’ approach. Learn about the condition, ask for support, and take things one step at a time rather than thinking too far ahead.
Most importantly, make sure you and your loved one are getting the support, advice and benefits available to you and don’t be afraid to reach out for help.
Is there anything you wish more people understood about being a carer?
Every carer is dealing with different challenges, whether related to caring responsibilities or other parts of life and no one should feel like they have to manage everything alone. Caring for someone else also means taking care of yourself because it’s much harder to support another person if you’re not getting the support and care you need too.
Judi’s story
Can you tell us a little about yourself and who you cared for?
My name is Judi and I was part of the team caring for a friend of more than 40 years, Pauline. She lived in West Yorkshire and I live 150 miles south so I visited when I could, but my main role was to advocate for the services she needed and support her family.
How did you first find out about Action for Pulmonary Fibrosis?
Pauline was told that she probably had pulmonary fibrosis over the phone and there would be a wait of several weeks, if not months to have that confirmed by a consultant. I knew then we needed information to fight for a diagnosis and treatment. Having cared for my children with rare conditions, I was aware that there would almost certainly be a charity for families with this condition so thanks to Google, I found Action for Pulmonary Fibrosis.
What kind of support helped you most during your caring journey?
The information on the website was key to us understanding Pauline's symptoms and what she needed. I rang the Support Line several times in the early weeks and the guidance the Support Line nurse gave helped me to know what to ask for and who to ask. She also checked on how I was doing. It is so easy when you are on a mission to get the appropriate care for a loved one to forget how tiring and emotionally draining that is. I needed her to help me be realistic about how much I could do.
The other time the Support Line nurse was so helpful was when Pauline was in hospital. Several times I needed to challenge staff about the care plan they should be following. Although I have a nursing background, I needed the specific details the nurse gave me. One example was on the day Pauline was discharged, the Support Line nurse asked if they had arranged an oxygen supply for the nursing home, they hadn't. After several phone calls, the oxygen arrived half an hour before she did. Without the prompt, that wouldn't have happened.
I joined several online support group sessions. These were really helpful in learning from others who were further along the journey with pulmonary fibrosis and just knowing you weren't alone.
One thing that has really helped me is to get involved in supporting medical research teams. After my experience of caring for Pauline, I have had the opportunity to give a patient or carer's point of view, often called PPI (Patient and Public Involvement). We get the chance to explain to researchers what it's like to have the condition and what the most important questions are that we need answering. There are lots of ways to be involved and that's so helpful in trying to make things better for those who follow us.
What are some of the biggest challenges you face as a carer?
For me, the biggest challenge in caring for my friend was that I'm also a carer for a family member with different care needs. Juggling the two left little time to get the routine things done and you constantly feel under pressure.
What advice would you give to other carers supporting someone with pulmonary fibrosis?
My advice would be to accept help from others whenever you can. Write down what needs doing so you are ready when someone asks how they can help. If you have someone who lives at a distance but wants to be involved, can they make phone calls, keep a check on when appointments are coming up, or order medications?
Is there anything you wish more people understood about being a carer?
People who haven't been a carer often don't appreciate the burden of responsibility we feel. I have been a carer for two family members with other conditions for 18 years and have lost count of how many times someone has said, 'can't you get someone else to do that?' The answer is often 'No, if I don't do it no one else will'.
Are you caring for a loved one with pulmonary fibrosis?
If you’re caring for someone with pulmonary fibrosis, remember that support is always available. You don’t have to navigate your caring journey alone. Head to our carers page for information and support options for your caring journey.