Living with an invisible condition: Dan’s story

Dan Longhurst is 30 years old, works in hospitality at Goodwood Motor Circuit and has CF.

How does CF impact your day-to-day life?

As many people may know, having CF comes with a long daily list of tasks. From taking nebulisers and inhalers to doing my physio and swallowing fistfuls of tablets, the most significant impact CF has on my day-to-day life is definitely the strict medicine routine. 

Having to complete this schedule twice a day, for up to two hours, as well as taking Creon® every time I eat (and I like my food), really does impact my time.

What are the biggest challenges of living with an invisible condition? 

Personally, I find the biggest challenge is managing the expectation of what you can actually do and achieve in the eyes of others on a day-to-day basis.

For me, CF can be such a sporadic condition to maintain. One morning I could wake up feeling groggy. Still, with a good bit of clearance, I can feel fine and take on the day. On other days I could do an intense physio/clearance session that completely exhausts me and limits what I am able to do that day; this becomes tenfold when dealing with an infection.

I'm never one to say I can't do something; I very much pride myself on that. However, as I get older, I have realised that I struggle to do some of the things I used to find easier, so managing my expectations and finding new ways of getting through the day without missing out or not feeling down is a big challenge for me.  

What do you think are the biggest misconceptions about CF? 

That medication isn’t a cure for everything. Recently I have had a huge change in how I do my treatments, which has been a game changer. Since I started taking full-time responsibility for my treatments (around the age of 15), I've always had my medication dotted around the place, sometimes having to sacrifice fridge or cupboard space for tablets and nebulisers over food (especially when I was living in shared accommodations at uni).

Until recently, I thought this was adequate but never really felt that I was getting the most out of my treatments, and I never quite had the opportunity to escape the reminder I have this condition because everywhere I looked, I could see my medications.

After working with my CF team, I've made a space in the house solely for CF in my home, and it's been a complete game changer. After nearly 30 years, I finally feel as though I have control over my CF. I can now enter and exit my set space for treatments and medication when needed. Since creating this separate space dedicated to my CF, I've not missed any medication, and my relationship with CF has improved. 

What's the one thing you wish more people knew about CF? 

The effort and daily management we must go through to have a relatively 'normal' day. I also wish more people were aware of the mental strain CF has on people, especially when dealing with the different aspects of the condition.

Do you have any tips to help people start conversations about CF? 

Be unapologetically you. I use humour to express myself when talking about my CF, whether to friends and family or strangers; that's how I feel comfortable when having new interactions about CF. I would tell people to use the most comfortable way to express how they feel when it comes to starting those conversations. 

If you had one bit of advice for a young person with CF today, what would it be? 

Remember that you are not alone. I know this always sounds so cliche, but honestly, I would have given anything to have grown up as a young person with the ability to get in touch and talk to people with the same condition. CF can be a lonely condition at the best of times, and the early part of my life was difficult. I feel if I had the chance to talk to others like me, it would have changed my outlook and relationship with CF going into my teen years. 

It can be a fine line when interacting with others with CF, especially as the condition is so varied, but if it's done sensitively and can make having CF much easier. It's definitely more special when you go through it as a team and a community.   

What advice would you give your younger self, and what do you wish you knew then that you know now? 

Please do your physio regularly and find a sport or activity you enjoy; you'll thank yourself in the future. I was always an active kid when I was growing up, I swam competitively, but sadly I gave it up when I reached university. 

It was a huge part of my physio (without feeling like physio), and looking back, I would be far better off chest-wise (and mentally) if I kept active. In the last few years, I've started sport climbing (top rope, lead & bouldering). It allows me to stay active and do extra physio without feeling like part of my treatment.   

Why is raising awareness of CF important?

Awareness is so important to ensure that people with CF don't feel like outsiders. If people have better knowledge about the condition, then we won't have to explain ourselves to employers, colleagues, new friends, partners, parents of babies with CF or our families.

What does a life unlimited mean to you? 

A life unlimited to me doesn't mean that we have a cure. Even though I am unable to take any of these new life-changing drugs, and my treatment burden isn’t lightened, I am still able to show that I carry my CF with broader shoulders. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.

Cystic fibrosis is an invisible condition, you can’t see what it does to the body. But it’s not invisible to the thousands of people whose lives are dominated by it every single day.

You’ll never see the hours of coughing, the mountain of pills or the trips to the hospital. You’ll just see a person with an invisible condition, trying to live a life unlimited.

The challenge of living with CF is invisible. Except to the ones who live it.