"The last couple of years have been been a window into our community": Matilda's #CFTruths story

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As part of our #CFTruths campaign, we caught up with Matilda, 23, who shared her experience of the COVID-19 pandemic, the importance of raising awareness of cystic fibrosis, and her advice for other young people with CF. 

Hi Matilda, can you tell us a little about yourself. 

My name is Matilda, I'm from Shropshire and I am 23 years old - I can't believe I am writing that, time has gone so quickly. I have CF, also known as cystic fibrosis, CFRD (CF-related diabetes) and many wonderfully annoying allergies. I like being creative, positive (when I can be) and encouraging people to embrace themselves for who they are, whilst raising awareness of all things CF.

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

Growing up, I was always pretty healthy in regard to my CF. I’m a real stickler for routine: three daily nebs; twice-daily physio without fail; endless tablets and antibiotics; and IVs every three months. My routine helped me stay on top of things, but it's not always in your control. As I reached 18, things got progressively worse. I had accepted my shortened life expectancy a long time ago, but as soon as I met someone I wanted to spend my life with that quickly changed; I was afraid of dying because of what I would lose: the time, the relationships, the chance to build a future.

After years of laughing it off, and coping through humour, suddenly having to deal with real, big emotions was hard. I hear a lot of people say, 'don't let CF define you', or 'don't let CF stop you from doing anything', but it's not as easy as that. For years, CF did stop me, because I couldn't physically do something, and it did define me, because CF is part of every aspect of my life. Does that mean I let CF control me? No, but it is there, always, whether I want it to be or not. As much as CF is horrible, a lot of the time, people ask me if I could click my fingers and get rid of it, would I? I always said no, I like the person it has made me: CF taught me a lot, and I don't resent it, but if I could click today and take it away from my future, yes, I'm 90% sure I would. 

What was your experience of the COVID-19 pandemic? 

The last couple of years have been very different for everyone, but for those with CF it has been a window into their community. For the first time, people are experiencing one of the aspects of CF: isolation! Every day, people living with CF shield ourselves from everyday germs fearing it could turn into something worse which could kill us; everyday, we turn down opportunities whilst watching everyone enjoy them, because it’s too dangerous or ‘I’m too tired or poorly’; every day we feel isolated like no one understands, because the only other people who could possibly understand are people we can’t ever meet.

The extremely vulnerable have been dismissed and forgotten about over the last few years, but it highlights how we have not been valued for years. Working from home is now more accepted due to able-bodied people needing to do so, and I’m hoping companies now appreciate the need for working from home for many disabled people! I felt so dismissed, under-valued, and disposable throughout the pandemic, and struggled mentally after being conditioned to fear for my life.

The bit that shook me the most was removing the need to isolate when you are COVID-19 positive. My panic attacks and psychologist sessions have increased as my coping mechanisms just weren’t working anymore. I found it hard to find someone who could relate to my situation, because those of us with CF cannot meet. I am trying to see the positives that came from this experience, that people have experienced some aspects of what it is like to be chronically ill or have CF.

Every day, people living with CF shield ourselves from everyday germs fearing it could turn into something worse which could kill us; everyday, we turn down opportunities whilst watching everyone enjoy them, because it’s too dangerous or ‘I’m too tired or poorly’; every day we feel isolated like no one understands, because the only other people who could possibly understand are people we can’t ever meet.

Matilda
The #CFTruths campaign aims to show people what it’s really like to live with CF. What do you think is the importance of raising awareness?

CF affects so many aspects of your life, you have to dedicate so much time to it that people do not realise, especially workplaces. Family and friends still don't understand the vast amount of planning, effort, and emotional trauma that comes with having CF and neither do the general public, but they can learn about it, or what they can do to support or help someone who is living with it.

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

Trust your instincts, you know your body best. Don’t compare yourself to others, prioritise your health without losing out. Life is all about balance. Find a good support system and you will feel the benefits.

Something else I have learnt is if anyone is going to have an opinion that ACTUALLY MATTERS about my body it is going to be me, and I have decided I love my body and how much it has fought to still be here. That is what beauty is to me. 

I always think of it like this: What is normal? Your abnormal is my normal, but I wouldn’t change that. This has always been my normal, but because it’s different to yours does that really make it abnormal? Isn’t everyone normal? Or is everyone actually abnormal?

Compliment yourself, give yourself credit for what you have been through and how your body has carried you through and most of all, don’t listen to anyone who tells you otherwise!

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

Believe in yourself, don't be ashamed of CF, help people learn about how they can support or help you better by telling them your opinions or experiences.

And finally, what is your #CFTruth? 

You know your body best. Don't feel bad or think that you are lazy for not being able to get up at 5am and exercise every day. For some, that is massively beneficial, but for the majority of us, our bodies don't let us, and that's not because we aren't trying. CF is different for everyone, so why are we comparing ourselves to others.

Caitlin

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