Cost of CF: Chantelle’s story

My name is Chantelle and I’m from Liverpool. I was diagnosed with cystic fibrosis at 6 weeks old, and then at 12 I was diagnosed with CF-related diabetes, and at 14 arthritis, which was linked to my CF. Two years ago, I was diagnosed with stage three kidney failure due to my diabetes. So it really does feel like one challenge after another sometimes.

When you've got so many different things that are all linked to your CF, it's like they all kind of interfere with one another. It’s a bit like a spider diagram! A lot of people think CF just affects your chest and lungs, but what they don't realise is that CF comes with so many other challenges too.

The impact on my mental health can be really tough. In my experience, a lot of people brush it off because I might look well on the outside, but on the inside, the extra pressure of trying to keep yourself healthy and navigate everyday life with CF can be really stressful and brings with it lots of anxiety.

I have lost several jobs due to having cystic fibrosis and being off sick or at hospital appointments. When I’m unwell and need to take time off it gives me a lot of anxiety thinking ‘Am I going to lose my job?’ and ‘How will I pay for things if I do?’. It’s not as simple as just going to get benefits; the system can be hard to navigate and if you miss one thing or don’t check that one box, that’s it, you’re not getting any support.

The hidden costs

The increasing cost of food, fuel and parking prices has created a lot of worry about how I’m going to pay for these things to keep myself healthy.

People with CF need a high calorie diet and doing a food shop can be much more expensive than it is for the general population. So for a person without CF it could be £20-£30 per week, whereas because I need double the amount of calories and bigger portions, my shopping could be £60 a week. And that’s just for me, not including my partner and his daughter.

With the cost of living continuing to rise, that is only going to get higher - it could be £70 by next week. I’m always looking for tips and tricks to make my shopping as cheap as possible and make savings where I can, but even the bare minimum of what I need is so expensive right now.

Travel to hospital appointments is also a big expense. I live in Wallasey and my hospital is in Liverpool, so to get public transport would mean two buses and a long walk, which I would find difficult due to my CF and arthritis. This means that I need to have a car, and the cost of insurance, tax, fuel, tunnel fare and parking is a massive expense to my budget.

Energy bills are another big worry for people with CF. We’ve got to keep ourselves warm. We have medications take that need to be stored in fridges. All these things add up.

I can't work full time because of my CF. I’ve tried but I always end up getting ill and I’ve found the maximum amount of time I can work without getting ill is three days a week. When you’re working fewer hours but have so many more extra costs to pay for, it’s a constant worry.

It makes me stressed and angry

The rising costs of living with CF make me feel stressed and angry. Sometimes I think, ‘Why me? What have I done to deserve all this?’ I’m dealing with CF every single day, and then even more things are thrown my way.

I think the Trust’s Cost of CF campaign is really important as it will help people to understand that it's not just the condition that we live with, it’s the actual cost of having the condition too.

I’d like to see the Government cap prices on things like fuel and energy, and to stop shops from increasing prices. I also hope CF will be added to the prescription charge exemption list in England. I qualify for free prescriptions because of my diabetes, but for so many in the community it’s another added expense on top of everything else.

I think all these things would make a difference for me and others in the CF community.

Thank you so much to Chantelle for sharing her experiences.

Chantelle’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