Sarah’s story: “You need that one person who understands you without saying a word” 

I was four when I was diagnosed with cystic fibrosis, long before the heel prick test was used with newborn babies. However, my mum always knew something wasn’t right. I didn’t like to be held, I would bruise when picked up, and my digestion was an issue. 

I wasn’t overly affected by my CF until I reached the age of 11. From that point on I’d be in and out of hospital with regular chest infections requiring intravenous antibiotics, and my weight would plummet - something that still affects me psychologically to this day. Needing huge amounts of calories when you feel unwell is a hard battle and lots of my CF friends (more on that later) would need to be tube fed to keep up with the demand. 

I pulled through the tough times with my dark sense of humour 

In my adult life, I went from rebellion to being the model patient and all things in between. As I got older, I’d become ill more frequently and find infections harder to shift. At 25, I started suffering from multiple pneumothoraces. These are holes in the lungs caused by old infection scarring wearing away and leading to lung collapse. Treatment was painful and invasive. It felt like I was on a downward spiral. I pulled through all the tough times with my dark sense of humour intact and a hard resilience that comes only when you’ve had to grow up too fast. 

Fast forward to November 2019, my health was stable-ish but my lung function was low. Enter Kaftrio! This treatment has changed my present and future into a far more positive one with actual possibilities. I’m doing so well on Kaftrio that we’re trying for a baby and I’ve even gone back to work. 

I’ve seen both sides of the cross-infection coin 

Now I’ve told you a little about my CF journey, now on to the issue of cross-infection. When I was growing up, it just wasn’t understood to be an issue. There were five of us with CF regularly together on the children’s ward and we were thick as thieves. I suppose the greatest thing was that I never had to explain anything to them. I remember when the time came that I needed to discuss having a portacath - a permanent device that sits under the skin and can give you access for IV antibiotics - it was decided that we’d go across to Paul’s room (my best CF friend) and I could see it being accessed and ask him any questions to set my mind at rest. That experience felt invaluable.  

I know that my mum especially found it a great source of support to have those families around to talk about any CF-related problems. They’d often be found in the parent's lounge sharing a cup of tea and debating the best way to get us to take our medication, often with much rolling of eyes at our ingenious new ways of getting out of it.  

Towards the end of my paediatric care at age 16, things began to change. In fact, it felt like it was overnight. I moved my care to Liverpool Heart and Chest Hospital as my local hospital didn’t have the facilities to treat adult CF patients and all the complications that come with getting older with the condition. There was now new research into the risks of cross-infection and we were no longer allowed near each other. We all found this hard and I felt lonely sometimes too.  

Having to separate the patients also meant the parents saw less of each other. I actually think my mum felt guilty if she got to see my friends when I wasn’t able to. Of course, other parents felt the same and we drifted. It almost felt naughty if we saw them in the corridor and said hello.  

You need that one person who understands you without saying a word 

Many years later and the guidance around cross-infection feels like the norm. The internet, social media and video calling has brought the CF community together virtually. This makes me very happy as there are just times when you don’t want to have to explain your life story to be understood and this is true of any hardship not just CF. 

The pandemic especially showed us that having people who ‘get it’ made life feel that little bit easier and for me personally, my CF circle increased a lot during that time. I’ve made some new lifelong friends and spoken out more to help raise awareness for CF among other things. Having CF friends again helped me to find my voice and a new passion - helping others by using my own knowledge and experiences. I encourage anyone to find even one person who understands you without having to say a word. 

I feel lucky to have been on both sides of the cross-infection coin. I was lucky to be able to have contact with those inspirational people. It’s just not possible now and for good reason but there are still so many ways to reach out. Seven years ago I helped set up a group for parents of children with CF. The group is a chance to engage and talk about different aspects of CF care, without having to explain complex medical jargon and medications no one else will have heard of.  

I wanted to put myself out there as an example of a thriving CF adult as I knew they wouldn’t have had access to anyone else. I meet with the parents face-to-face and I hope it’s taken some of the stigma out of parents of those with CF being able to meet up. When I first met the CF mum who helped me create this group, she went home and told her son that she’d met me and his words will forever haunt me: “Oh so other people have CF too”. I couldn’t believe it; through segregation this was something we’d clearly missed. The thought of families not having access to the support my mum benefitted from disturbs me. It’s so important to look for new ways to reach the same results. We’re all great friends now and I look forward to their little and not-so-little ones having an easier future, one where cross-infection never crosses their minds either - but for very different reasons. 

You can find our information on cross-infection here.  

Make your cuppa count this FeBrewary - join the par-tea! 

Next month is FeBrewary, a chance to host a tea party, bring your friends and family together, and raise vital funds for everyone with cystic fibrosis.  

We want to make all our fundraising activities accessible and inclusive for the CF community, so we’re encouraging our supporters to host virtual tea parties when they can’t meet in person. 

We’ve got loads of tips on our FeBrewary fundraising pack, plus Zoom backgrounds for those virtual meet-ups. Register here, or email our community fundraising team with any questions.  

Join the par-tea