“There are lots of things that come with having CF, but the financial burden was one that I never saw coming”: Kate’s story

I was diagnosed with CF from birth, which I would imagine is somewhat easier than realising you have it later on in life and having to make drastic changes. For me, I have never know any other way so I don’t feel like I’m missing out on a life that I haven’t had. I think as a kid I had it quite easy – I never spent any time in hospital as I was well, and I don’t remember having IVs.

But I do remember every night having to do my physio and hating it. I would cry, and my brother and sister would play games with me to try and help me through it. I found living with cystic fibrosis become harder as I grew up and was forced to take responsibility for my health. Those days where you just can’t be bothered, and you wish it would all go away. You’re angry and think ‘that’s it. I’m not taking the tablets or doing the nebs’, but then knowing that if you didn’t, the next day would feel even worse.

There’s such a difference between how my friends live their lives, and how I live mine. They’ve been able to start their own families and seemingly grow up carefree. Everything I do has consequences – good or bad, and not being able to have children has been a difficult pill to swallow.

There are lots of things that come with having CF, but the financial burden was one that I never saw coming. I thought just having to live with the condition was the worst that could be thrown at me. But how wrong was I?

Due to infections, I have night sweats. This means that I have to wash my bedding every single night. I have two sets, which means that one is constantly in the washing machine or dryer – add that to the normal washing loads… it means my washing machine and dryer are constantly running, which is a massive cost in itself.

Then there’s the extra food I need to eat in order to stay well. I am small and slim, which means I am actively trying to put weight on. I also have CF-related diabetes, which means I need to be careful and considerate with the foods I do consume. I make sure to eat additional fruit and vegetables, high protein, fibre and fats like nuts, seeds and yoghurt. All of which come at a big cost. Every day I make my meals from scratch so that I can track exactly what’s being added and I meal plan for the week ahead to try and keep costs down.

Another big cost for me is the petrol needed to go to all of the appointments I have to attend due to my CF and CF-related diabetes. I also need to have oxygen at home plus needing to feed very night, this adds considerably to my electricity bills.

Going on holiday seems like such an easy thing for most people, and it’s one of my favourite things to do but I’ve had to miss out on so many experiences because the cost of insurance is just so high. And then there’s the additional cost of having to add oxygen to the flight – it seems unfair that I have to pay to be able to breathe on a plane.  

What seems like a cheap getaway with the girls turns into an extra £1k which I simply cannot afford. I have missed two weddings due to the cost of oxygen and insurance. 

I am lucky that I have an amazing husband, family and friends who would never let me struggle. But now my parents are retired, my friends all have their own families and my husband does all he can. I am scared for the future and the rising cost of living. I can’t go back to work due to my health so I don’t know what I can do.

My hopes for the future are that cystic fibrosis becomes more widely recognised. I used to compare it to cancer – we know we’re going to go sooner than the rest but we don’t know when. We are sick a lot of the time, run down, tired, stressed. But we are expected to just carry on. 

I want the Government to recognise this condition, just because we get on with it without fuss doesn’t mean that we don’t need help. Because we do.

Knowing that my time will come sooner than others my age is difficult to comprehend and something I think about a lot, but try not to let rule my thoughts. I want to experience as much of life as possible as and when I can. But now with the cost of living and the financial burden of having cystic fibrosis, it’s all on such a tight budget – I sadly know that there’s no way of achieving most of the things I wish I could be able to.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Kate's experience may bring up complicated emotions, and we would encourage those who need advice relating to topics raised within this story to contact our Helpline or get in touch with us on social media.

You can also find out more about the financial support we offer here.

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Read more about our Cost of CF report and what we’re calling for