“There is no one-size-fits-all when it comes to CF”: Emily shares her story

In the UK, there are over 11,000 of us who live with CF every single day. We know only too well that no matter what drugs we are offered right now, there is no cure. And yes, this realisation can keep you up at night, but it’s a reality that we have become accustomed to since birth.  

The one thing I can say with certainty, however, is that there is no one-size-fits-all when it comes to CF – each of us battles different symptoms and takes hundreds of different medications to maintain a degree of health. But more importantly, there are more than 11,000 people with exciting dreams and hopes, passions and memories. And that, to me, is more important to talk about than CF as a personality trait. 

When I was little, I wanted to become a paediatric surgeon. My dreams were crushed when I realised that helping people like me was not something I could do through clinical means – so I thought again. Throughout my childhood, and as I got increasingly more unwell in my teens, education became a refuge that expanded my worldview and my perspective on my own reality. I left school with remarkably strong grades for a girl who was so sick, but I know that learning was the only space that I felt able to control and so learn I did. 

After Kaftrio, life felt different. I could speak in full sentences, walk up the stairs, sing with glee and breathe deeply for the first time in years. I packed up my belongings and went to university in Exeter, and I found my home in both place and people. I was loud, passionate, joyful – working hard and, at times, partying even harder. I felt a liberation that I truly never thought I would be granted. And then I got sick again. And again. And again. 

Kaftrio changed the game in so many ways, but it also made the inevitable decline even more brutal: at times, I felt like a shell with nothing more than a rubbish pair of lungs rattling inside. Cystic fibrosis is relentless, and mental health struggles can be an unfortunate companion to coping with such uncertainty and chronic pain.  

For many of my teen and young adult years, I have struggled with my mental health and have taken antidepressants for many years. Despite this, I would like to think I exude a joy and positivity that means these internal struggles go largely undetected.  

I was recently diagnosed as neurodiverse, and it has fundamentally altered how I recognise myself. I feel a certain validation that the way I think and see the world is not a defect, but a strength. My mental health struggles are not an embarrassing taboo, nor are they entirely related to my CF. And I face them as so many people do, with resilience and a hope.  

CF has led the way to the passions that ignite and motivate me now – I am a climate justice advocate and communicator, with a love of books and desire to preserve critical thinking and literacy across the world. I fight for an intersectional environmentalism and a society that lifts us all and protects those most vulnerable across the world.  

I don’t want to sit here and say that CF has been a good thing – it has, and will continue, to take so much from me. But this daily struggle reminds me that every day I have now is a bonus, and I absolutely want to make sure that I use this time to put more good into the world than I take from it.  

CF can and will hurt you, both physically and mentally, but it also creates some of the most talented, stubbornly resilient and caring people possible – so please, always nurture that side of you and share it with the wonderful, intoxicating place we call home. 

CF: It's complicated. One diagnosis. 11,000 realities.  

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