Cystic fibrosis and COVID-19: Lucy’s story

COVID-19 – well, where do I even begin? It feels like so long ago since life felt ‘normal’.

I remember watching the news each day as the Government were shutting different establishments and schools. When shielding was announced, although I was going to miss my boyfriend, I genuinely believed that after the first 12 weeks I would come back out to a normal world, the virus would have gone and that we would all be doing what we were doing before. How wrong was I?!

I found it hard when everyone was allowed to go out again

During shielding, I completed my dissertation for my undergraduate degree and had zero distractions whatsoever, so no excuse to not get the work done. I found it hard when everyone was allowed to go out on Saturday 4 July 2020, enjoying restaurants and getting on with their lives and I had to stay inside. I was having major FOMO (fear of missing out).

My family decided that after four months, when support bubbles came into place, I could see my boyfriend, which was lovely. It was around the same time that my grandma sadly died, so I appreciated the extra support. I’m an only child, and as much as I loved spending the quality time with my parents, I was ready to chat to someone my own age, in person.

At every point, I felt safe from COVID-19

I felt very safe during the pandemic as my parents were able to work from home. We were sanitising everything that came into the house, so I felt protected and secure. Catching COVID never really crossed my mind.

In September 2020, I started my Masters in Broadcast Journalism at the University of Salford and was reassured that everyone had to wear masks in the classrooms and maintain social distancing. I felt at every point that I was safe, and measures were in place to keep me away from the dreaded COVID.

January 2021 was so exciting as I got my first vaccination. It felt like a weight off my shoulders when I had had it.

Staying in and shielding is how I did my bit

When the second lockdown started and we had to go back into shielding, I found it slightly frustrating as I knew people that weren’t sticking to the rules. It annoyed me as I was effectively stuck in the house doing my bit and there were people who didn’t care about other people. I felt that it was my social and moral responsibility to do my bit, and I believe that staying in and shielding was playing my part in helping to keep hospital beds free.

Catching COVID-19 was such a scary experience – but thankfully, I recovered

I got my second and third vaccines and didn’t have any side effects.

But, at the start of January 2022, I did a lateral flow test, as during my physio I had a tight chest and a ‘barking’ cough. I was shocked when I saw the two lines come up to show a positive result. I immediately thought I would die or end up on a ventilator, as that’s what we who are clinically extremely vulnerable have been conditioned to believe.

I was, thankfully, ok, but I think this was largely due to being on Kaftrio. Now, I feel more confident going out and about with extra natural immunity.

Looking back to the start of the pandemic in 2020, I didn’t leave the house from March to June. I didn’t even go on a walk because no one knew the severity of the virus. I do feel some of the restrictions on us were very severe. Realistically now, if you went for a walk and stayed away from people, there would be little to no risk.

The pandemic means people can now understand the reality for people with CF

Although COVID has been detrimental to so many, it has also presented a unique opportunity that I don’t think would have arisen before. Now, if I was to go on public transport and it was busy or wintertime, I would feel confident wearing a mask and not worry that I would look ‘weird’. It is so much more acceptable to wear a face mask and stay away from people who are ill with coughs and colds.

I also think that COVID has shown that staying away from people is difficult, and I hope now people can understand the difficulties people with CF have had doing this for a very long time. Cross-infection is still a very real threat to people with CF and we still can’t mix, even after the social distancing rules have ended – this is our norm. I also think that people are a little bit more courteous when they have coughs and colds now, staying away from me to help keep me safe.

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.

Find out more