Meet the brains behind our brand new #CFTruths campaign

Hi Caitlin! Tell us a little bit about yourself…

My name is Caitlin, and I work in Medical Communications Consulting, leading the Patient Partnership Program at VMLY&R Health. I also have a black belt in karate, a hot air balloon pilot’s licence, and cystic fibrosis.

Can you tell us a little about your CF journey so far?

I was diagnosed with CF by a medical student as a very sickly 3-month-old baby. As a child, CF was just a part of life thanks to my amazing parents: my pills were laid out for me with my breakfast, I had physio whilst watching TV, and I got to eat as much as I wanted. My parents always encouraged me to do everything my friends were doing, so unless I was particularly unwell or had an IV line in, I was never stopped from an activity because of my CF.

Inevitably, this got more difficult as I grew older and had to take more responsibility for my own treatment, became progressively sicker, and was diagnosed with CF-related diabetes at age 16.

I’ve always tried to keep up with my peers and have been mostly successful in the long-term, but I can’t pretend that CF hasn’t done its best to stop me. When I started university, I was so excited to join every single society possible and had an incredible term of sports and partying. By the second term, I had to ask a friend to walk up a single flight of stairs to hand in my assignment for me, and I ended up in hospital for a course of IV antibiotics. I’ve been getting better at finding a balance, but it’s not easy.

Can you share a bit about your experience of the COVID-19 pandemic?

As it has for many, the pandemic introduced a huge amount of anxiety and isolation in my life.

People with CF were categorised as ‘clinically extremely vulnerable’, and, having been hospitalised as the result of a cold just a few months earlier, I took that seriously. It was particularly difficult when the restrictions eased and friends my age (mid 20s) started to live more normally again, but I was still shielding and not confident to take more risk until I was fully vaccinated, which offered some security.

What inspired you to come up with the #CFTruths campaign?

I came up with the idea for the campaign while working at Ogilvy Health, who ran an internal initiative for employees to create ideas for bold, disruptive campaigns. Working in health communications, I have always advocated for the importance of patient engagement, as they are the true experts in their condition and the reason we do what we do. I therefore decided to draw on my own experience to create a campaign to raise awareness for the Trust.

The idea sparked from a conversation with my CF nurse, who called me before a hospital visit to check that I didn’t have COVID-19. The first question: Do you have a persistent cough? There was a pause... I’ve known this nurse for nearly a decade and have had a cough the whole time. Of course! What do you think I’m coming in for? We laughed it off, but unfortunately most people don’t find my cough as amusing. Thus, ‘We were coughing before it went viral’ came to be!

We think that will resonate with so many in the CF community, Caitlin! What impact do you hope the campaign has?

The aim of the campaign is to grab attention and inspire people to learn more about the burden of CF on the people and families who are affected by it. It has always been difficult to get people to understand what it is like to live with CF, but I hope this campaign might help by relating it to our universal experience of the pandemic. Of course, both COVID-19 and CF are much more than what is captured in these snappy headlines – but when you delve deeper, we’re comparing one serious, life-limiting disease to another serious, life-limiting disease.

I would also love if the campaign empowered people with CF to own conversations around their condition. Some people find it difficult to talk about, as it is extremely personal and I think there is sometimes a fear that you will be treated differently. However, it is important for some people in your life to understand how CF affects you so that they can support you when you need it, and talking about it prevents unfair judgements and misconceptions.  

What does Cystic Fibrosis Trust mean to you?

The Trust provide valuable resources for all stages of life – their website is absolutely my go-to place for information and advice. It also provides a community of people just like me, which is invaluable as we can never meet in person due to risk of cross-infection.

I have been lucky enough not to directly require the range of support offered by the Trust, but it is comforting to know it is there if I need it. I have however benefited massively from the research and campaigning that they do – most recently for granting me access to a new treatment, Kaftrio, which has changed my life. Unfortunately, this is not available to all with CF and is not a cure, so there is still work to be done. 

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

Remember that CF is your enemy, not your treatments. Treatments may seem like the biggest burden day to day, but in the long-term they are on your side, keep you well, and allow you to live the rest of your life as you wish. Find a great TV show and watch an episode or two with your meds each day!

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

Have a think about who you are talking to: why do you want to talk to them about your CF and what do you want them to know? It is also important to think about how much you are comfortable with sharing beforehand, and remember that you don’t have to answer any questions that you don’t want to.

Most importantly, do not worry. I’ve found that almost everyone will be curious, sympathetic and understanding, and anyone who judges or dismisses you for your condition is not worth your company.

We completely agree, Caitlin. Finally, what is your CF truth?

Although CF puts up barriers, it also motivates me to break through them.

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.

The COVID-19 pandemic has made common many of the everyday experiences of the CF community. The sacrifices made. The distances kept. The milestones missed.

But while many people now look forward to a return to normality as restrictions lift, the effects of the pandemic are not over for all of us. Those with cystic fibrosis must go on experiencing them, every day.

Because we were coughing before it went viral.

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