“I had so much life ahead of me and no idea what to do with it” – Caitlin’s story

What was it like growing up with CF?

I don’t remember my diagnosis, but I wasn’t diagnosed as a baby – I was three years old. I didn’t have many signs or symptoms but got unwell very quickly when I was three. When I got to school age, my attendance was very hit and miss because I was unwell a lot.

This got worse when I got to year ten as my mum had breast cancer and I was a young carer. I was experiencing very low lung function and doctors were considering putting a feeding tube in as my weight was very low as well. 

Thankfully I’ve been very lucky and once I started Kaftrio my lung function went right up and my weight is a lot better. I used to cough 24/7 and couldn’t get through a sentence or laugh without coughing. The week I started Kaftrio I was coughing a lot and my lungs felt really sore. I couldn’t sleep properly because I was waking up early with huge bursts of energy. After about a week the coughing stopped, the pain eased, and it was literally like a breath of fresh air. It was a huge physical change, and I’ve been infection-free for three or four years now. 

Despite ups and downs with my health, I’ve always found my CF very straightforward. It’s not something I have ever been ashamed of, and I’ve always been very open about it with my friends, and am comfortable sharing my experiences. That’s part of the reason why I’m in the Involvement Group. I’m also lucky enough to have lots of supportive friends. I supposed I’d say that in a way, I’m proud of my CF. 

What do you do now?

I’m currently a part-time waitress and studying an MA in Theatre at York St John’s university. I did my undergraduate degree in teaching and special needs inclusion, but I’d always enjoyed the performing arts and musical theatre.

Kaftrio ended up impacting my Masters’ choice hugely. When I was applying for my undergraduate degree I didn’t have a lot of hope that I would be able to even go to university. My CF role models growing up were people I’d seen online who ended up having to have lung transplants or had passed away around the same age I was. 

Suddenly, my health was very good and doctors said I would now have to prepare to have a pension! I had so much life ahead of me and no idea what to do with it.

How did you decide to study theatre?

When I was younger, I’d been in a drama club and enjoyed the performing arts. I think I was encouraged to do my undergraduate degree in a career-based field because traditionally it leads to a more stable job, when my health was very unstable.

So studying the Masters’ is something just for me. It’s what I enjoy doing and I’m lucky enough to be able to follow my passion. Soon I’ll be able to see where it can take me, and though it’s going to be difficult, I’ve got the time and energy to try and make it work. 

Tell us about your final performance piece, Beyond the Roses

As the final part of my Masters’ I need to do a final performance, a dissertation and a viva, which is a sort of oral presentation about my final pieces. My dissertation is related to how chronic illness is performed and portrayed in theatre, and my final performance is called Beyond the Roses.

It’s a hopeful, physical theatre piece in three parts. The first part is me exploring my past and showing my restricted breathing. I’ll have my nebuliser as a prop on the stage and I’ve got an under-the-water aesthetic to represent that struggle for breath.

The second part is all about time and how that’s changed for me since Kaftrio. I use a musical metronome for this and demonstrate how much slower life is for me now that I have more time. 

In the final section, I have lots of yellow roses on the stage and show how free my life is in the present.  

I’m lucky to have a really supportive supervisor who has been really helpful in shaping the piece. I feel like it’s very unique and hope that people enjoy this modern take on CF and the hopeful tone I want to get across.

What’s next for you?

I’m planning to have a meeting with a lecturer post-uni because the realm of contemporary theatre is still very new to me. But I want to perform Beyond the Roses more and develop the piece further. I’m still really passionate about it and hopefully will be able to apply for funding to take it on tour or to festivals.