“Not being able to meet each other is one of the hardest parts of living with CF” : Phoebe's story

Nobody can understand what it’s like to be in your shoes 

My story is probably a bit different to a lot of people with CF, as I was diagnosed relatively late at 7 years old. I was very poorly as a child and my parents were constantly taking me to the doctors. They knew something was wrong, but it was quite a challenge for them to be heard by the GP. Once I was eventually diagnosed, I had a lot of hospital treatment and intense physio every day.  

At secondary school I felt really isolated. When you have a condition like CF, the first thing you want to do is speak to someone who's going through the same thing as you and I couldn’t. 

My family are amazing and so supportive, but they just couldn’t understand what it's like to be in my shoes, and no one really can unless they’ve experienced it.  

I think not being able to meet each other is one of the hardest parts of living with CF. You could literally be next door on a hospital ward to somebody with CF, but you can't meet them. And it's the hardest thing to know that someone is going through the same thing, but you’ll never meet. I think people without CF think it's like a made-up thing in movies, when actually it is real life for so many people. 

An unspoken bond 

During the COVID-19 pandemic, I became close to a couple of people with CF. We’d chat online and built a bond. We could laugh and have a good cry about the different things we struggle with. But more than that, it's an unspoken bond that we just understand what it is to go through CF.  

Me and my friend we always speak about how one day we'll be able to meet, and it won't be behind us, but it'll be a part of our lives that we will be glad that we got past. I hope that it is something that will eventually lift because of new research breakthroughs and the treatments that are available for everyone.  

The mental challenges of life with CF 

CF is such a unique thing because you can be so poorly but present yourself as just an average person with no health issues. Through school, people couldn’t fathom how someone like me could be in hospital at two weeks at a time and be so unwell, when I present myself as well on the outside.  

Kaftrio has made a big difference to my health, but it was quite a big adjustment mentally and it wasn’t an easy transition. The media labelled it as a miracle drug, when a lot of us were going through really tough times navigating a whole new life that we’d never imagined for ourselves.  

I think mental health can be an unspoken thing in CF and my CF psychologist has been amazing. I started seeing him in my teenage years; it was a time when I kept my CF very hidden. As I was entering the adult world with CF, I struggled with how to tell people I live with this condition. I spoke to my CF psychologist, and he helped me to navigate those conversations. 

And then when I went on to Kaftrio I had a bit of a mental health blip, and he supported me through that. It was really helpful in equipping me with the tools to navigate life with CF as an adult rather than a child, because it is two very different things.