Lily and Will’s story: The mental toll of CF
Will's diagnosis
Will and I started dating when I was 26 and have been together for ten years now!
Will had just turned 32 when he received his CF diagnosis after many hospital visits, frustration and no understanding from either of us about what was happening.
He'd always been athletic, but he would always have some sort of cough or bad cold spell that he would dismiss as being out in the cold air for too long. But it just wasn't clearing up. He's also always been quite slender, and we thought that was also down to all his exercise, but obviously, once we started to connect the dots, it all made sense.
When we received the news, we weren't sure how to handle it. It's scary, and it lets a lot of terrifying "what ifs" into the open. But the more we learned together and researched the best possible ways to navigate the diagnosis, the easier it became.
Dealing with the diagnosis
Most of those who are diagnosed with CF receive the news at a young age. But for adults who have already known life before the disease, it can be tremendously tough to come to terms with it.
Most people know CF is a life-changing genetic disease, but not everyone knows just how much it can impact you mentally.
Having something that not only hinders you physically but makes you reshape your whole future isn't something you want to go through alone. Regarding your mental state as just as important as your physical symptoms will help you to keep as level-headed and mentally protected as possible.
Because you're beginning to mourn your old life, it can feel like you're suddenly out of control. This is why having conversations about how you're feeling will benefit everyone, and you can begin to build your support system.
It's not uncommon to feel like your body is not your own, and you might not feel like the same person you were beforehand. Will and I have always been big fans of the outdoors and took any and every opportunity to seek out adventure. He's always been into physical exercise, but going to extremes with white-water sports and chilly camping expeditions was what made him who he is today. So, when we realised it wasn't going to be as easy as booking a weekend or two away anymore, he felt like he'd lost himself.
Watching someone you love go through such a crisis of self-undrestanding was one of the hardest aspects early into our journey. As a bystander who only knew what the doctors told me and what the internet said, it's safe to say I did not have a clue about what he was going through.
When you're a partner of someone with a chronic illness, you learn early on that putting their needs and feelings before your own comes almost naturally. It's easy to feel swallowed up by the sea of information and scary medical jargon thrown at you.
Patience is a virtue that not everyone understands until you have to go through months of learning important routines and the names of medicines. I was frustrated at our new lifestyle for the first few months, and I've learned that it's important to be kind to yourself too. You're allowed to feel stressed and heartbroken as a partner and caregiver.
Watching old holiday vlogs led us to confront our issues and we decided to see how we could regain some of our old life back. Now, we have a whole new memory card of trips to look back on. It just takes time to realise your body's new limits.
Dating with CF
Navigating the dating scene while dealing with CF can be intense, so it's important to understand some of the obstacles you might encounter.
Getting into a new relationship with someone with CF can become very serious very quickly, with things like hospital visits and lifesaving surgeries. It can dominate how the relationship plays out and leave no breathing space or time to talk. Making expectations and boundaries clear early on is one of the best things you can do.
Although this can all sound negative, CF can also bring people closer together. Ultimately, the best thing you can do is have open and honest conversations.
Will asked me questions like…
- Do you feel like you're getting enough attention?
- Am I being a burden?
- Do you feel like I'm holding you back?
- Do you still see me in the same way as when you met me?
- Are you still with me because of my illness?
All of these came from a place of anxiety and insecurity and were by no means easy questions to ask. But saying that, they weren't hard to answer either. The answers won't be the same for every couple, and we went back and forth on the top question. Sometimes, your needs can be neglected when chronic illness is involved, so you should address the issue as soon as possible.
Having a family
There's also considering what the future looks like with this other person — more specifically, are kids on the cards? One big thing they often stress is how tough it can be for men with CF to have kids without support. Then, there's also a chance that your child might also have CF. These are tough issues that people with CF are forced to grapple with because, unfortunately, they could easily become a part of their reality.
When the doctors asked us if there was a chance that I was pregnant, we quickly realised we needed to have this conversation. I was adamant that it would be too hard for me to raise a child alone if something were to happen and that we'd only just gotten some of our lives back. It's important to remember it's not the end of the line — you can expand your family by other means if you want to.
Managing medical expectations
When you have medicine on your mind, it's easy to slip into a rabbit hole of research that can end up reassuring you — or leaving you disappointed. And that's what nothing can prepare you for: the words, "you're not eligible", or "I'm afraid it won't help".
The introduction of Kaftrio brought wonders to many of the families we've had contact with online, but Will's CF was initially deemed not bad enough to qualify. It wasn't available to him. We tried our best to be happy for our friends, but it didn't stop the whys and what-ifs from sneaking into our minds at the time.
This is when you need to be honest with yourself and others. Managing these feelings of disappointment won't be easy, but it can be helped by some self-protection. Whether that's by being strict on what you google, tuning out of any news alerts or simply by asking others not to do their own research in the hopes they'll help.
Disappointment can be so hard to manage, but we are very lucky that Will is now on Kaftrio!
Feeling hopeful
CF impacts so much more than the lungs and digestion; it affects everything. You can't control CF, but you should not let it control you either. After three years of hospital stays, surgeries and lots of medication, Will and I have finally found a place where we can plant our feet solidly without waiting for bad news.
After discussing what we really want from each other and our lives as a whole, we put a plan in place. Although so many parts of our lives had changed because of CF, we didn’t want the little parts of who WE are to get lost.
Now, we are the proud owners of a Border Collie called Skye and a new camper van; we’re able to enjoy the outdoors with a fresh perspective. So far, we’ve ticked off a lot on our destination bucket list, including Cornwall, the Isle of Wight, and the districts (both Lake and Peak). But our best one yet was none other than the NC500 in Scotland. Will used to have family in Scotland, so we always wanted to go, and this trip brought us so much closer.
Seeing Will be able to stand by the sea again and look exactly how he used to has been nothing short of miraculous, and if he can look at life this way again, so can I.
Both men and women with cystic fibrosis (CF) may have problems conceiving a child ‘naturally’ for various reasons. Find out more about how CF affects the reproductive system and fertility of men and women, and the different fertility treatments available.
Download our family planning resources guide to get information for adults with CF and their partners who are thinking about having children.
Download the family planning factsheet
If you would like help to explore any challenging topics or issues that are affecting your mental health, speak to your CF team about access to a CF psychologist.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.
Here to help
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.