Hannah and Jon’s story: Having a partner with CF

How did you meet your partner?

We actually met on Tinder! We were probably in the very first wave of Tinder and we matched in 2014 and met face to face in 2015. We’ve been together for eight years now, and we just got married last November!

How did Jon tell you about his CF?

Jon has a really unusual relationship with his CF. I think he told me about the second or third date. It was the first time I’d gone to his house, and he was climbing up the stairs to his flat when I could hear his Creon tablets rattling in his pocket. I asked, “what’s that in your pocket” and he was very casual, saying “it’s just my tablets”. I asked what they were for, thinking it’d be vitamins or something, and he said, “they’re for my CF”, he didn’t even turn around and look at me. He was so casual about it. It didn’t really bother me at all and to be honest it just sums up his relationship with CF for the most time we’ve been together. It was just business as usual for him.

Did you know anything about CF before he told you?

I knew a bit about it as it’s one of the things they normally teach you at school when you learn about genetics and things like that, but beyond the name and knowing that it was a lung thing, that was about it. I’m a naturally curious person anyway so I did some digging, but it was never a thing that’s affected how I felt about him or how I saw the relationship progressing.

What is it like dating someone with CF?

I’ve been in one or two serious relationships before I met Jon and it’s not hugely different. I think when you love someone, you love them because of who they are not despite it. It’s only really when his CF flares up that you really think about it. I think we’d been dating for nearly two years when he had his first stay in hospital. He had hemoptysis which is where he started coughing up blood and so he was rushed to his nearest CF clinic. It was really horrible, and quite scary. That was kind of the first time we were like, oh he has this thing. He’s had a few more stays in hospital, mostly for infections, or to try and help the hemoptysis, but other than that he’s been fairly healthy so it’s not something we always think about.

Obviously, diet is really important so we try and eat high calorie, high nutritional value food, which is also low fat, so that can be a bit of a tricky balance, but we both love cooking so that works for us.

It’s just an extra level of precaution, really. When we got married, it was two years after the pandemic, but we still asked everyone to take a COVID test before they came because it’s just not a risk we want to take. When we go to airports, we still wear our face masks.

Jon manages his CF through exercise, so rather than doing percussive therapy or using a vest, he uses running and working out to help him with clearance. He is crazy-strict about it; 5 days a week he’ll be out exercising and there is no compromise on that, even if he’s knackered from work. I’d say his mindset and dedication to exercising and keeping fit is not necessarily something I’ve experienced before. Jon’s always says, “I have CF, but CF doesn’t have me”, so he’ll always push himself into sports, exercise, and creative pursuits.

Is Jon able to access Kaftrio? What’s that been like?

He was on Kaftrio when it was first approved in late 2020 and he was on it for about two months. Unfortunately, Kaftrio really did not agree with Jon, our experience was really quite negative. I know it’s an absolute game-changer for so many people and it’s incredible, but Jon really suffered on it. There was some airway benefit, and his lung function did improve, but the impact on his mental health and some of the other side effects were just not worth it, so he stopped taking it. He’s still having trouble with the side effects now, even after all this time.

I’m hoping as time goes on and we get better modulators that he finds one that suits him. We follow a few CF influencers who are on Kaftrio and they’re posting about how amazing it is and how they don’t have to worry anymore and it’s amazing to see, but it’s not great for everyone. Jon had paranoia and insomnia and all kinds of problems. I’m hoping in the future something will be right for us.

Do you have any advice for other couples where someone has CF?

My main advice would be to try and have as much of a dialogue about it as they feel comfortable with. Obviously, there are some parts of CF that some people might find a little bit gross or strange, like airway clearance, so if they don’t feel comfortable with you being in the room when it’s happening then saying things like “oh I’m popping to the shops if you want to do your physio now” can be really helpful. If they don’t want to take their nebulisers or tablets in front of you, don’t be offended. It’s quite a private thing for some people and although Jon now happily sits on the sofa and does his nebulisers with me there, when we first started dating it was not something he did.

I would also say, try to ask questions and make sure you’re both roughly on the same page. Obviously CF can impact things like if you want a family, so it’s better to have that conversation sooner rather than later and try and be really supportive. The mental aspect of CF can be really challenging and really hard. Things like going to clinic and being told your lung function is down when you weren’t expecting it can really knock a person’s confidence, so it’s just about making sure you’re that person to offer some support and normality that isn’t about their health.

Do you think there’s anything that should be spoken about more in terms of CF and relationships?

I think there’s a lot of focus on young people and CF. There’s a lot about children and teens and growing up with CF and that transition from childhood to adulthood but there seems to be a bit of a gap between becoming an adult at 18 and then family planning, which could be 20 years down the line for some people.

There doesn’t seem to be a huge amount of resources on subjects like how to tell someone you’re dating you have CF, or how do you tell someone you can’t have kids? I think it’s important to share stories of couples like myself and Jon, who aren’t going to have a family, and we’re completely okay with that. Seeing more stories of people who have met someone and are happy with that would be great. You can still live a really rich and meaningful life with the parameters that CF puts on you. It doesn’t need to be presented as a big heartache, though I understand it is for some people, I think sometimes it’s just a choice, or making the best of a bad situation, or sometimes it’s a situation that you always wanted anyway.

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.

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