My story: Natalie

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I was diagnosed with having cystic fibrosis at two weeks old. It's a genetic condition and so it's something that I have had to deal with throughout my life. Now, newborn babies are screened for cystic fibrosis with the heel prick test shortly after birth, but I was diagnosed because I had something called Meconium Ileus; a bowel blockage that required me to have surgery as a baby.

It's hard to explain to people on how the condition affects me as it's hard to know where to begin. 

There is no cure for cystic fibrosis. I have to go through hours of laborious treatments every day to try to prevent the rate of decline of my body. My condition affects my lungs, digestive system and other organs, making it a very complex condition with lots of challenging symptoms to deal with. 

These include: how the thick mucous in my lungs traps bacteria, which causes infection and inflammation, which scars my airways and makes me more susceptible to future infections and lung function decline; how the mucous in my digestive tract blocks the release of digestive enzymes from my pancreas so I have to take tablets every time that I eat in order to digest food and prevent malabsorption of vital nutrients; how I'm at risk of CF-related diabetes because of these issues with my pancreas; how I'm prone to heartburn that makes it feel as if my chest is being simultaneously burnt from the inside and crushed from the outside; how my digestive system and liver can be damaged from all of the medication that I have to take - I take around 40 tablets, including pharmaceutical medications and nutritional supplements every day. I have numerous inhalers and spend a lot of time inhaling therapies through a nebuliser. I have to do daily physiotherapy and exercise to keep my lungs clear and to maintain fitness. 

But really, each one of these physical manifestations of my condition affects me hugely on a mental level. CF is a condition that is hugely variable by the day or even the hour. One day I might cough a lot, the next I may not. One day I may be full of energy, the next morning I may turn my alarm off in my sleep. One day I may feel like an athlete, and a few hours later be uncomfortably bloated for no apparent reason. It's exhausting trying to identify the causes of these highs and lows, trying to predict them and trying to plan for them. 

I experience guilt almost daily. If I were to do all of my treatments, therapies, and exercises every day, it would easily take me 4 hours. I can't do that every day, so there's always a sense of compromise and the feeling that I could have done more, that I should do more, and that I could always do more, sometimes haunts me.

Then there's mental exhaustion from the logistical nightmare in my mind, trying to optimise my time, prioritise what treatments will be most beneficial or more realistic that day. There have been days in the past that I've ended up skipping treatments altogether because I'm so mentally exhausted from planning and re-planning every hour as my day unfolds that I feel like I've already done everything 100 times over! Every single meal time, I have to consciously think about what I will be eating and decide how many digestive enzymes I should take. After 27 years, it still feels like a guessing game.

And then, there are other sources of anxiety. 

People coughing near me. Are they contagious? Do they have CF, too? People with CF can't meet in person due to a high risk of cross-infection)?

Exercising is crucial for me to maintain my health. I train to stay alive. But what about exercising outside or taking a class in central London? Will the air pollution that I'm inhaling deeply be more detrimental than skipping my workout entirely? 

What about if I get unwell? Who will pay my rent if I'm unable to work? 

Spontaneity? What's that?

Lucky probably isn't the right word to describe my situation, but I have been fortunate, through a lot of hard work and sheer determination, to remain healthy for someone with cystic fibrosis. However, last year I did have to leave my full-time corporate marketing job to go freelance so that I could get some flexibility back into my life and feel able to focus on my health. I had known for a long time that a high-pressure office job with long hours wouldn't be sustainable for me long-term, and I quite liked the idea of a portfolio career, but I still kind of hated that I had to make a compromise. I wrote about my experience making this decision in my blog post, 'I quit my job to save my health'. 

Another big part why I'm so well today is not just due to my own hard work and determination but that of my family. My incredible parents and Nan put in so many hours when I was younger to keep me active and happy, to help me stick to my treatments, and to do hours of daily physiotherapy to keep my lungs clear. They'd be with me at hospital appointments, they'd chauffeur me around so that I could avoid germ-filled public transport where possible, and above all, they are always, always there when I need them - for a chat, a cuddle or mum's homemade chicken stew (a cure-all... almost!). Their unwavering support means the world to me and I absolutely cherish them. There are days when life can feel really lonely. Cystic fibrosis is a lot to deal with. But my family understand my condition better than almost anyone else in my life and knowing that they're always there for me helps me every day. 

Another thing that I'd like to add is that despite all of these daily struggles, having cystic fibrosis has made me the person that I am. Like everyone with cystic fibrosis, I dream of the day that there's a cure, but I wouldn't want to know a life without it.

It's given me determination, self-motivation, dedication, and strength, and given me an incredible perspective on life. I'm very good at taking joy in little things and expressing my gratitude. I understand the meaning of hard work. I train to keep alive and have learned to get comfortable with being uncomfortable. I seize opportunities but don't take stupid risks. I try to always be kind as you never know what someone may be going through; I know this better than anyone, living with an invisible condition. I'm insatiably curious; we have so much still to learn about our bodies and about the world around us. I've learned what it means to have confidence and courage. I love deeply, avoid conflict and never hold grudges. Life's to short to be anything but happy.

Natalie's blog is here: nataliejohanna.com

If you would like to learn more about Natalie's condition please visit: https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis