Macauley’s story: “Being required to wear a hearing aid felt like the first visible part of having CF”
Living in the here and now
I’m Macauley, I live with my wife in Wellingborough and I work for Monzo bank. I was diagnosed with cystic fibrosis at two weeks old. I’m the youngest of three and am really close to all my family – they have been a constant source of support for me.
I try to be really positive when it comes to my CF; I’ve always been that way and try to not let my condition define me. You can spend a lot of time worrying: what if I catch this or that? What if this happens in the future? But I just try to focus on the here and now and all the good things that are happening in my life. I have faith that there’s so much research going on that will change what it’s like to live with CF in the future.
There have been challenges along the way when it comes to my CF, the biggest one was when I was told I had Nontuberculous mycobacteria (NTM) at 17. They tried to hit the infection very aggressively and I was in hospital for four weeks, but unfortunately it didn’t work. It really took a toll on me mentally.
Managing hearing loss
I had more treatment, which although reduced the infection, still didn’t get rid of it completely. It was also around this time that I developed hearing loss. It was caused by a nebuliser treatment that I was taking for the infection. I was extremely surprised when I found out I had hearing loss as I wasn't aware this was a common consequence of the treatment. My hearing is affected in my left ear but not my right (known as asymmetrical hearing loss).
I have a fancy hearing aid which has phone-connectivity, which I bought privately. It means I can hear phone notifications and videos more clearly. This also allows me to use my phone as a microphone. I can set it in the middle of a table if I’m in a loud group setting like a pub. I’ve been open with people explaining that I may be asking them to repeat themselves and have appreciated them accommodating me.
Having hearing loss and being required to wear a hearing aid is now for me, the first visible part of having CF, which is widely known as an ‘invisible illness'. The main frustration is that it wasn’t as a cause of a CF-related complication, yet a result of treatment taken due to having a CF-lung infection at the time.
More research into hearing loss in CF would improve and influence decisions on what avenue of treatment is best, considering the potential side effects before continuing. It would prepare people for what may happen, and would also encourage stricter oversight and monitoring of hearing loss.
Living the life you want to
To me, a life unlimited is about those with CF living the lives they want to fulfil, to achieve everything and more to reach optimal happiness and contentment. It’s about reducing or eliminating the burden of treatment and need to be reminded that you have CF and every now and then it takes precedence over the stuff you’d rather be doing.
I try to be really positive when it comes to my CF; I’ve always been that way and try to not let my condition define me. You can spend a lot of time worrying: what if I catch this or that? What if this happens in the future? But I just try to focus on the here and now and all the good things that are happening in my life.
Macauley
Advice to my younger self
Everyone would love a time machine right? In my case, it’d be in the interest of reassurance. I’d tell my younger self that it’s natural to feel worried or apprehensive. To be prepared for tackling some tough conversations even at a young age, and while at the time it may feel like the end of the world, it’s that experience that is going to shape you as a person and your positive outlook on life.
To know that you’re never alone and life will be what you make it, so be compliant, listen and don’t be afraid to lean on people. Having CF won’t define you, but you’ll come to learn that it feels good to be unique and there’s actually some positives you can take from it. Be hopeful in modern medicine and listen to the professionals, their passion is as big as yours. Take a genuine interest and be inquisitive in understanding why things work a little differently. Use the support available and value your support networks. Be optimistic and look ahead, you’ll be surprised in how powerful your mind is. Finally, live your life and make an impact, ultimately, it’s why you’re here.
Thank you to Macauley for sharing his story!
We are co-funding two exciting and innovative research studies with RNID, to redesign aminoglycosides to prevent hearing loss and to develop easier and novel ways to detect hearing loss.
Let’s get to a life unlimited for everyone with CF – faster.
Our goal is a day where there are effective treatments for everyone with CF. We need life-changing treatments, treatments that minimise harmful impacts like hearing loss, treatments that work for every person with CF – and we need them now. But we can’t get there without your support.
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