In memory of Caroline Dillon

Caroline was a Storyteller for the Taskforce for Lung Health in 2020, and worked with Taskforce member, Action for Pulmonary Fibrosis, to help support others living with the condition. Caroline also shared her story to help change attitudes towards people with lung disease.

Caroline had been diagnosed with Pulmonary Fibrosis, Mixed Connective Tissue Disease and Non Specific Interstitial Pneumonia. She sadly passed away, aged 60, in August 2020. She was deeply committed towards raising awareness of pulmonary fibrosis and lung disease more generally. She will be greatly missed, especially by her two sons; Jack and Henry.

Judith McNulty, friend, said, ‘I met Caroline at a Frodsham Support Group meeting shortly after I'd been diagnosed with Pulmonary Fibrosis and we soon became good friends. She showed me by example how to live life with Pulmonary Fibrosis and not to be restricted by an oxygen tank. Caroline was generous with her time, informing and educating people about Pulmonary Fibrosis. She wanted to make a difference. She certainly achieved that as Caroline made a huge difference to my life and to the numerous other people whose lives she touched.’

Caroline had recently moved to Frodsham, Cheshire. Caroline had a dry wit and a great sense of humour. She joked, “I have only lived here three years. People remember me. They don’t remember me because of my beautiful face, they remember me because of this hose up my nose”. Caroline was being humble because she was fondly known for her work in the community and the support group she set up for the Chester area.

Sarah Douglas, Ambassador, Pulmonary Fibrosis Trust, said, ‘’I met Caroline on a Facebook support group page many years ago when she commented on one of my posts to say she was local to me. We became Facebook friends straight away and we shared our stories of pulmonary fibrosis. She regularly attended any charity events I held in Runcorn. We became closer when we met up at the Frodsham support group. Then we joined forces to help local patients in their battle with the disease.

Despite Caroline’s condition getting worse and her being added to the transplant list she remained positive and upbeat and was passionate about us helping others in the area. She loved her children and dog and would always tell us stories about them and show us photographs. She will be sorely missed at the Frodsham support group by all the members, her passion to continue helping others will remain the focus of our group and will remain a legacy to her, as well as my dad, whom I lost to IPF. Goodnight god bless sweetheart. Breathe easy, now’.’

Caroline was passionate about challenging attitudes towards people with lung disease. She spoke about how her oxygen tank was almost like a “white stick” and how it signalled to people that she had a lung condition. She spoke about the invisibility of lung conditions, and how, in her words, “When you are not on oxygen people just think you are fat and lazy”. Her story resonated with many people, and helped the Taskforce raise awareness of the prejudice which people with lung conditions can often face.

Dr Alison Cook, chair of the Taskforce for Lung Health, said, “Working with Caroline was a privilege and we will forever be grateful to her for sharing her story, which has helped us raise awareness of the discriminatory attitudes people with lung disease face. We are deeply sad that she is no longer with us  but we will continue to be inspired by her memory and continue to campaign for the best possible care and support for everyone affected by lung disease.”

Caroline was a teacher and had worked for as long as her condition would allow. We were struck by her good humour and ability to turn her diagnosis and oxygen treatment into a teaching moment for her students.  she wanted to make the most of how visible her oxygen tank made her condition. Talking about her time as a teacher, Caroline joked about using her oxygen tank as a way to scare students about the dangers of smoking, even though she, herself, had never smoked. In her own words, Caroline said, “I had students who were smokers and I would say, ‘Look! This is what can happen to you!”.

Julie Reynolds, Stories Officer, Taskforce for Lung Health, said, ‘’I visited lovely Caroline to interview her for her story of living with PF. I was met by Carrie, Caroline’s cute and excitable little dog.

“We sat and had tea and chocolate wafers and chatted. We instantly connected and Caroline’s dry wit and humour came through as she shared her life experience. Caroline’s story covered her diagnosis journey, living with oxygen and the attitudes she and her sons had lived through, and exercise.

“On the journey home, Caroline drove me to the train station. We chatted about all things and had a giggle. We stayed in touch. Thank you, Caroline for all that you have done to help people be aware of how we live with lung disease. We will carry on your hugely impressive efforts to ensure that every person with lung disease gets the care and support that they deserve.’’

Caroline ran a support group with Action for Pulmonary Fibrosis (APF). This was the 75th group for the Trust. Caroline was also connected to the local group in Frodsham and had many friends there.

Steve Jones, Chair of Action for Pulmonary Fibrosis, said,Caroline was a delightful person – energetic and so brave. I will always remember her warm smiling face and how she was so welcoming and kind to everyone. She was a highly valued member of the Action for Pulmonary Fibrosis community.

“Caroline was always so positive and determined - so ‘happy to be involved’. Caroline was always thinking of others, even from her hospital bed. While most people find managing one support group to be a full-time job, Caroline led and encouraged several support groups in the north-west. We will all really miss her.

“Caroline loved including her dog in her zoom calls, and often spoke proudly about her sons at meetings. She joined one of our meetings from her hospital bed just days before she died and was wonderfully positive and supportive. I spoke to her a few days before she passed away and she asked me how, in her last days, she could help to raise awareness of this horrible disease. We planned for her to make another youtube video but sadly it was not to be.

“Caroline was an amazing woman, always there for others.  On behalf of the Board of Trustees and staff of Action for Pulmonary Fibrosis, I would like to pay tribute to Caroline’s positive spirit in the face of so many challenges brought by the disease, and thank her for her wonderful commitment and support for the charity.”

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30 September 2020