"CF is part of my life, but it hasn’t stopped me from living it”: Adam’s CF Week story

The challenges of living with CF

Physically, there’s the chest pain, the constant coughing, spitting out the really disgustingly coloured mucus, the breathlessness. Mentally, managing CF can be difficult when you’re not feeling your best. When I’m stressed, disorganised or struggling mentally, I still have to keep up with my physio and medication. It can feel like a cycle, because if I’m not taking care of myself mentally, it becomes harder to take care of myself physically, and that can affect my health. 

A day in the life with CF

A typical day starts with physio. Getting physio done early helps set up the rest of the day. After that, there’s medication and everything else that comes with managing CF. Throughout the day I’m thinking about food, treatments and making sure I stay on top of everything. Then there’s another physio session later on. A day in the life with CF means constantly thinking about CF because it affects so many decisions throughout the day. It's always there so you can’t ignore it. 

The reality of living with an invisible condition 

One of the biggest things I wish people understood is that CF is invisible, it’s impossible to see. I think it’s important not to rush to judge people with CF if they’re coughing a lot or seem different. At the end of the day, everyone’s the same as everyone else – I just have a disease and other people don’t.

A lot of people have never even heard of CF. That’s why awareness matters. The more people understand, the easier it is for people with CF to feel accepted and supported.

How CF has changed my outlook on life

When you have CF, the reality is that nothing is guaranteed. I know people with CF who have died, and that’s incredibly sad. It makes you appreciate what you have right now rather than taking things for granted.

I feel very lucky. I’m 19, I’m at university, and I’ve been able to do things like take part in the London Marathon. CF is part of my life, but it hasn’t stopped me from living it. 

How supporting the Trust makes a difference

CF affects a lot of people, and it takes lives. Fundraising events like Wear Yellow Day help raise money to support people who need it and ultimately improve their lives. Through research, I’ve been able to access treatments that weren’t available before and that have helped me a lot. 

The Trust supported my mum when I was born and was there during difficult times. Having that support reminds you that you’re not alone. There’s always someone there to listen, offer advice and help when you need it.

Advice for someone newly diagnosed

Sometimes you’ll want to fight it, and sometimes you’ll hate it. There will be days when you don’t want to do your treatments or think about CF at all. But it’s important not to ignore it. Let it grow with you. Acknowledge it, learn how to live with it and take care of yourself.

Looking ahead

My biggest hope for the future is good health. I want to stay healthy and fit, finish my degree and keep doing the things I love with the people I love.

I imagine everyone says the same thing: I hope one day there’s a cure. A cure would be great. A cure is the end goal. But I don't live my life expecting there to be a cure. Instead, I focus on handling my CF well today, then doing the same tomorrow, and the day after that. If I can keep doing that and live a long, happy and prosperous life with CF, then I’ll be happy.