My 'normal' life with Cystic Fibrosis blog

Cystic Fibrosis, or CF for short, is a condition in which the lungs become clogged with a thick mucus, making it difficult to breathe and potentially eventually causing the lungs to malfunction altogether. It is believed that around 1 in every 2,500 babies are diagnosed with this condition and unfortunately, life expectancy tends to be reduced.

Although there is no cure for CF at this time, there are a number of treatments available for keeping this condition under control and sufferers can lead fulfilling lives doing what they enjoy.

Ciaran McWilliams is a filmmaker from London who opened up to us about living with CF, the difficulties he encounters, and his plans for the future.

Check out Ciaran's website here and follow him on Twitter here.

Find out more about cystic fibrosis on the NHS website.

Before the age of 21, I had never been open about having Cystic Fibrosis; it was something I never spoke about, something I had to keep to myself - an “embarrassing” secret that I did not want others to find out as I feared about what they would think of me, or how they would treat me, if they had known. I’d make up excuses as to why I would cough so much, why I would be absent for weeks, or why I was much thinner than other people, and more, to keep others from finding out the truth. Even now, at the age of 27, this is something I still struggle with.

I turned 21 in 2011, and shortly after I had made the biggest change of my life, something I hadn’t once dreamed that I would get to do: I moved from South East London to Plymouth for three years to study a BA in Film at Plymouth College of Art. As I came towards the end of my final year at Plymouth College of Art, my health was deteriorating, and I wasn’t going to be able to graduate with my class - it looked like I wasn’t going to be able to graduate at all. It took me an extra year of studying from home, but I managed to graduate and get my BA in 2015. Since then, I’ve done a lot of things I didn’t think I’d ever get to do, including this, writing openly about my life with Cystic Fibrosis.

Cystic Fibrosis - CF for short - is a genetic illness which mostly affects the lungs, but also other organs such as the digestive system, among others, leading to many different problems with the body. Due to this, those with CF are most prone to illness such as chest infections. Exacerbations can lead to frequent and often prolonged stays in hospital for treatment, interfering with things such as work, school and home. While treatment is always improving, CF is a recessive illness and worsens over time and often results in disability; the average life expectancy now for those with Cystic Fibrosis is in the late 30s to early 40s range. CF is an invisible illness, and not everyone with CF has the same symptoms.

I was diagnosed with CF at the age of two, and had realised from a very young age about the impact the illness would have on my life; because of this, I had always been extremely aware of how different I was compared to others. I had spent a great deal of my childhood and my teen years alone, isolating myself due to the thought that I wouldn’t - and couldn’t - fit in with “normal” people. Instead, I used video games, the internet, and film as a means of escape from everything else. These three things would go on to later serve as my main sources of inspiration as an artist, and would also inform the way I work.

For the first year and a half while studying in Plymouth, I wasn’t sure whether I was doing the right thing; I struggled to find my place on the course, and with constant illness, I found it hard to keep up with the others and I wasn’t able to work in the more physically demanding traditional way of filmmaking. With the help and support from my lecturers, I started to look into new ways of creating art with film which would allow me to continue working even if I fell ill. I started to experiment by using ‘found film’ and applying different materials, such as paint and bleach, to super-8 and 16mm film stock and playing with projectors. Using these techniques, I had finally found a way of creating experimental film which allowed me to work by myself, and at my own pace, without as much worry about my health slowing me down. My graduation film for the BA, a 12-minute piece entitled ‘Veiled’, was the culmination of my previous experimentation with using ‘found film’.

On the day that I received my results from Plymouth in June 2015, I had also received an email from the ICA in London. I had been selected for STOP PLAY RECORD, a programme which supports 24 London-based filmmakers between the age of 16 - 24 each year to develop short films which have the chance to be shown on Channel 4 First Acts - either online or on television. Later that year, I began a Master’s degree in Experimental Film at Kingston University. I used my time at Kingston to change my approach to the way I work, changing my focus to digital filmmaking. I also used the STOP PLAY RECORD opportunity to do something I didn’t think I would physically be able to do: I managed to create my first short without using ‘found film’, but instead using a team and an actor within a studio to create an extremely personal piece entitled ‘HIKIKOMORI’.

My health began to get worse little by little, and much of the production I was working under extreme stress, all while not really being physically well enough. Unfortunately, the film continued to get delayed over and over as my CF began to take over again. In late-March of this year, my health took a turn for the worse, and I became more ill than I ever had before. This resulted in me having to spend roughly 5 weeks in hospital. I wasn’t going to allow an emergency hospital stay stop me from completing ‘HIKIKOMORI’ after having worked so hard on it for almost a year and knowing how close I was to finishing it. I completed the final edit of the film while bedridden in hospital, and finally delivered the film at the end of April.

Since graduating from my BA, I’ve had work shown at the London Short Film Festival, the BFI Southbank, and the ICA, and have work showing at the Open City Documentary Festival in September. I’ve gotten a Master’s degree, and I’ve finished my short film for STOP PLAY RECORD, which is currently awaiting release by Channel 4 Random Acts. Despite Cystic Fibrosis, I’ve managed to do a lot of things that I never thought I’d ever do.

- Ciaran McWilliams