During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Sophie Pierce, an adult with CF.  

If I’m honest, I can’t imagine a life where I can fully “cross out CF” — cystic fibrosis (CF) is part of me. After 31 years of fine-tuning how to manage my health so that I can have the best quality of life possible, I’ve become conditioned to consider CF in everything that I do. 

My name is Sophie, I’m nearly 32, I live in Wales, UK and I was diagnosed with CF at 3 months old. 

In a lot of ways, I live a lifestyle that might be more common to see in someone without a complex chronic illness. I’m a rowin. g coach and I love spending weekends in my campervan and hiking with my dogs. I work full time as a social worker and I am currently preparing to row 3,200 miles across the Atlantic Ocean, from Lanzarote in the Canary Islands to Antigua, next year. But alongside all of these aspects of my life, there is CF. Whether it is doing nebulisers in my campervan, taking time off from work for IV antibiotics, or working closely with a multi-disciplinary CF team to get myself as well as possible before setting off on my Atlantic crossing — CF is a constant presence in my life.

I might be bold enough to push the boundaries of what is possible when living with CF, but the truth is, I have never allowed myself to truly imagine life without CF. Eight years ago, I realized that in order for me to have a fulfilling life, I had to stop fighting CF and start accepting it,which is still a work in progress. When I say “accepting,” this is by no means a passive process, but rather a very active decision. It is a process of being deeply honest about how I feel about CF, how it affects me day to day, and figuring out what I need to do to look after my health so that I can stay as well as I can, for as long as I can. 

The notion of fighting anything is exhausting. I had become exhausted with trying to hide the reality of CF from my life. I was tired of feeling embarrassed and somewhat shameful for needing extra help. I needed to let go of that pressure so I could finally focus on living with CF instead of fighting against it. A big shift for me came when I realized that I didn’t have a choice about whether I had CF or not, but that I did have a choice about how I lived with it. And so, rather than crossing CF out in my daily life, I chose to actively embrace it. 

Everything changed four and a half years ago when I gained access to a mutation-targeted modulator therapy. Literally overnight, my life changed for the better. I no longer coughed constantly. I could inhale more air into my lungs. I could walk up a hill without panting and I no longer felt as though my lungs were constantly full of mucus.

For the first time in my life I felt hopeful about imagining a future where I could make choices that weren’t just a response to my declining health. 

It was only when “crossing out CF” — living a life that wasn’t dictated by CF — felt within my reach that I was honest with myself about how much I wanted to not have to embrace CF into my life. However, whilst this new medication  has significantly improved my life, it still hasn’t enabled me to fully “cross out cf.” I still have to do daily nebulisers and physiotherapy, take 20+ tablets, attend regular hospital appointments, and even get admitted into the hospital. The real difference is that I feel I have more time — time that I never thought I’d have. 

Two years ago, a friend and fellow rower asked me, “Have you ever thought about rowing across the Atlantic?” — and the rest is history. So here I am now —part of a team of four women who plan to row from Lanzarote to Antigua in January 2025. We will be unassisted, taking everything we need to survive 70 days at sea, including all the things I might need to manage my CF — nebulisers, tablets, antibiotics, and all. Being 1,000 miles from land at our most remote point, we will have a bucket for a toilet, a bucket for a shower (thankfully not the same bucket!), and a stove to boil water.

In completing this challenge I will be the first person with CF to row across an ocean. This is not only an opportunity for an epic adventure but more importantly, it gives me a platform to advocate for the CF community. I am incredibly privileged to have access to a life-changing therapy, something that I am well aware many in the CF community do not yet have. As a crew, we want to work towards a future where everyone with CF has a life-changing therapy that allows them to dare to dream. We are rowing to a future where 100% of the CF community can finally breathe easier and fill the space CF currently takes up with activities and challenges that fill them up and allow them to live beyond CF. That is why we have chosen Emily’s Entourage as one of the charities we will be supporting — to help make that dream, a reality.

Author

Sophie is 31 years old from Wales, UK, where she works professionally as a social worker for children and families. Sophie lives with cystic fibrosis and is a trustee for the UK-based charity, Cystic Fibrosis Trust. In her spare time, she loves nothing more than hiking with her dogs, sea swimming, going on trips in her campervan or rowing with her local rowing club.