Cystic Fibrosis and Mental Health (GP)

My name is Siobhan Coles and I would first of all like to start off by thanking Shannon for the opportunity to be featured on her Blog for Cystic Fibrosis Awareness Month!

I am here today to talk about my own experiences of life with Cystic Fibrosis and its effects on Mental Health, all too often Mental Health is pushed to one side and not always considered as being important when it comes to our physical health and the effects that Cystic Fibrosis is having on our lungs. Our clinical teams are constantly looking at numbers and test results and trying to find the best solution to treat the chest infections that we grow in our lungs. Friends and family tend to only notice when we are coughing more, when we become more tired and possibly less motivated to do everyday tasks, like getting dressed for example. In the last three years my Cystic Fibrosis and Mental Health have had a huge impact on me as a person specifically when I started college and had to start taking a lot more responsibility of managing my Cystic Fibrosis, I was also at the early stages of transitioning to the Cystic Fibrosis Adult Services. When I look back at this time in my life I was not ready for the changes at all, I barely felt prepared when I transitioned and truth be told I was really scared! The first time that I was affected mentally with my Cystic Fibrosis was when I caught the flu back 2017 after being on an amazing trip to Berlin with my A-Level History class. After three days of being back at home barely unable to breathe, my mental health plummeted; I couldn’t understand what was wrong with my body. I felt so guilty that I had let myself and my family down because I didn’t look after myself whilst I was away as I was so conscious of what my peers might think of me taking my medication and doing my physio. Admittedly I was embarrassed by my condition

This was the result, bed bound in hospital for three weeks on oxygen and doing intense physio three times a day to clear the flu infection from my lungs. I also had daily sessions with a Cystic Fibrosis clinical psychologist where I discussed my fears about becoming older and more responsible for my condition. I was afraid of becoming so unwell again so much so that I even feared death which sounds so dramatic to some, but with lungs that deteriorate everyday through such a debilitating disease it is a fear that is always sub consciously in the back of your head. The fear of not being able to breathe and the realisation that Cystic Fibrosis maybe the reason that one day you don’t wake up. It is scary and quite morbid I know but when you are in such a state it can be hard to see the light at the end of the tunnel, flu took a might long recovery time, around 6 months to be precise and it was hard, and mentally exhausting. The times I cried myself to sleep and wished that something or someone would just take it all away. I soon got better and started thinking more positively, specifically when 2018 came around and it was New Year, fresh start. I was so motivated to create content for my YouTube Channel Colezy’s Corner (https://www.youtube.com/channel/ ) and raise awareness for Cystic Fibrosis, showing the community that Cystic Fibrosis does not have to define you. You can live a Life Unlimited! Sadly however during a lovely little break to Cornwall with my parents I caught the chest fungal infection ABPA defined as Allergic Broncho Pulmonary Aspergillus. This was probably the hardest and scariest time of my life, when I was rushed into hospital after an emergency clinic appointment I honestly thought I wasn’t going to leave hospital. My oxygen levels had dropped to 80%, I was out of breath from just walking a couple of steps, I couldn’t stand and the hardest part of all, something so simple and something that I believe we all take for granted is breathing, I simply couldn’t breathe. I had sharp pains with every breath and tears that were waiting to fall because I felt so hopeless.

Recovery was long, mentally and physically exhausting but I got through it stronger and more determined than ever! My mind was in a good place and summer 2018 was truly the best of all, I had picked myself up and it was honestly such a proud achievement, I had proven to myself and others that I could fight Cystic Fibrosis. The best part of summer 2018 was being invited to Buckingham Palace through the voluntary work that I do for charity and the NHS. This was also my motivation for getting better! It was such a wonderful event and amazing to be part of something that celebrated the good work of humanity.

Going to Buckingham Palace was also a little reminder that when you put your mind to anything you are capable of anything. A little quote that I learned last year from the iconic star Audrey Hepburn was “Nothing is impossible, the word itself say I’m Possible.” Cystic Fibrosis might be mentally and physically draining at the best of times but you have to show Cystic Fibrosis who is boss, own Cystic Fibrosis - don’t let it own you! Train your mind to be positive, be around people who inspire you and bring out the best in you and always be grateful to your family, feel blessed that every day you wake up is an opportunity to make change and do something AMAZING! I hope you’re all well and that you have enjoyed reading. 

Take care and keep smiling! Siobhan x