Elaina’s story: “She’s the one person in my life who understands completely what I’m going through, but I can’t see her”

My diagnosis

I was diagnosed with cystic fibrosis at three months old. My parents had no idea they were carriers, but as a baby I wasn’t putting on any weight. I would cry all the time, which now makes a lot of sense because I wasn’t digesting anything, so I would have been in a lot of pain. 

My parents took me to be checked multiple times, but I think my mum was made to feel like she was overreacting. The doctors thought I was fine, so it was really difficult for her over those first three months because I think she just knew something was wrong, even though she was being told otherwise.

After blood tests showed I had cystic fibrosis I was put on Creon and almost immediately my parents said I was like a different baby; I was happy and healthy, as I was finally able to digest food. I can’t even imagine how difficult it would have been for my parents to know something wasn’t right but be reassured everything was fine. Only to eventually be told that I had an incurable chronic condition.

Growing up with CF

I’ve been fairly healthy growing up, which I think is a combination of luck, hard work, but a huge portion of credit to my parents! Particularly my mum who always made sure I did all my treatments and physio by the book. 

I was very lucky that through most of school I had support. Myself and my parents had very open communication with my teachers, and I was trusted to take care of my medications. During my short time at university, there were so many provisions offered that I didn’t even realise existed. Such as extra time, extensions on deadlines due to ill health, and general check ins for support – all of which made the world of difference. 

My experience of Kaftrio*

I can take Kaftrio, but I’m not currently on it. I tried it just after coming off steroids, which further contributed to a lot of weight gain - which I was uncomfortable with. I also really struggled to sleep on Kaftrio and my mental health was terrible as a result. While I could feel the benefits in my lungs, it wasn’t enough to outweigh the negatives. So, I decided to stop taking it.

I revisited it a few years later and noticed an entirely different set of side effects. I was only on it just over a week but became depressed in a way I had never experienced before. The only thing that had changed was being on Kaftrio, so I had to stop it. It really scared me as my mental health was impacted in such a negative way in such a short space of time. 

Despite this I’m open to trying it again in the future. It was a difficult time because I really wanted it to work, and it didn’t. Yet it felt like the rhetoric around the drug was that anyone that didn’t get on with it was ungrateful for not putting up with the side effects. I hope that anyone else with a similar experience knows that they are entitled to weigh up what the best choice is for them, even if it means coming off the drug. 

The reality of life with CF

My health is pretty good now. I do feel like elements of my CF have swapped: growing up I had a lot of energy, but my chest was probably worse, whereas now, my chest and lung function is in a good place, but my general fatigue is a lot more challenging than it used to be. It’s weird because I always imagined that if my chest was better then everything would be great! Unfortunately, it’s just the reality of having CF.

I’ve only ever worked part-time jobs and I have wondered: do I not have a full-time job because I think I can’t, or because health-wise I actually can’t? And I’m still not quite sure so I’m just testing the waters at the moment with what I can do. I work in a college supporting children with additional needs and I love it! I work considerable hours but would want to increase my workload in future if I could.  

Friendships with other people with CF

One of my close friends has CF and I’ve never ever met her in person. I think that’s one of the cruelest things about having CF, which most people don’t realise. It’s so bittersweet, because she’s the one person in my life who understands completely what I’m going through, but I can’t see her. I share a bond with her that I don’t share with anyone else, which is so special, but also so hard because everything has to be online. 

We all go through periods where we look at our phone and see messages and think ‘I can’t be bothered today!’ but you have to make the effort to maintain that relationship. In that aspect, we can find it really hard, but it’s nice knowing that when we speak, we just pick up where we left off. 

For a long time, I shied away from contact with other people with CF because it was too upsetting. And I still agree with that sentiment somewhat, because whenever my friend is in hospital, I worry about her all the time. It also makes me think about how easily it could have been me unwell instead. It doesn’t feel fair. But, having that support and connection with her, I wouldn’t change our friendship for the world. It is overwhelming sometimes, but I think if I could give advice to others, it would be to know that if and when you’re ready to reach out to other people with CF, it can be hard, but it is so worth it. 

Advice to my younger self

My main advice would be that it’s ok to progress in my own time! In a lot of ways, I grew up very quickly, particularly in some areas of emotional development. I think anyone with a chronic condition does go through things that your peers couldn’t even fathom, but in other ways you can feel behind. Things like going out, partying, drinking, dating. Also, all the bullet point indicators of adult life like driving, moving out being in an adult relationship - I felt like it took me longer to catch up on.

I was so scared of being complacent and never wanted to think too far ahead in case something bad happened and I got unwell, so looking back I wish I had been more ok taking things one step at a time. 

One thing I think so many of us with chronic illnesses share a struggle with is relationships. Particularly all the perceived baggage we think we bring. Being in a healthy and loving relationship has brought out so many issues I didn’t even realise I had. Thinking that I don’t deserve to be with someone as it’s unfair to put my illness on them.  Especially when I was first dating my boyfriend, a lot of my worries were around not understanding why he wanted to be with me because I felt like damaged goods, but I try really hard to remind myself that I am not damaged, and that everyone comes with their own baggage and problems. It just comes in different forms! We all deserve to feel love chronic illness or not. 

Hopes for the future

I’m working hard to be happy and focus on all the things I’m grateful for in life, like my partner, my friends, my family. I’m really enjoying work and I would love to continue to support people with additional needs. Having CF definitely allows you to appreciate the importance of advocacy and supporting people in their differences.  

The stories we share are people's own personal experiences. If you are affected by any of the issues raised, please contact our Helpline for support, a listening ear or just someone to talk to. 

*Please speak to your CF team if you have any questions about Kaftrio, or experience any negative changes to your mental or physical health while taking the treatment. They are there to help you and support you. You should always speak to your CF team before you change, start, or stop any part of your treatment regimen.

Further information can be found in our factsheet Kaftrio: Complex and Individual Experiences. We will continue to update our information and guidance if and when new information becomes available.  

You can report suspected side effects to medicines using the Yellow Card reporting scheme.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 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.