CF Week: Demi's story

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Over the past few days we have heard the ups and downs of balancing cystic fibrosis (CF) and, in each, a strength and determination has shone through. Today, 23-year old Demi from Worcestershire shares how she went from growing up hiding her invisible illness to embracing it whole-heartedly.

Life can be hard sometimes but growing up with a hidden disability can be even harder. There are so many negatives around living with CF, and I want to try and show people out there that it can be made a positive in your life. I spent the majority of my years keeping my illness to myself and the older I’ve gotten the more I’ve regretted my decisions about not shouting it from the roof tops.

Growing up with an invisible illness

Throughout my life, I have been embarrassed about having cystic fibrosis. I wish I had seen more positive posts to stop me from being ashamed of who I truly am; however, growing up with the hidden disability, social media wasn’t as prominent back then (through school) as it is today.

When I was younger, I couldn’t truly understand certain things that were happening to my body, and no one else around me knew the answers as my friends were oblivious to this as well. I used to wake up an extra half an hour earlier than my sister so I could complete my morning physio before school.

When I got older (around 15 or 16), I wanted to be more independent: to stay over at my friends and go places for the day, much like ‘normal’ teenagers do. My parents always tried to allow me my freedom and to enjoy my life, but there are boundaries when living with cystic fibrosis. I never wanted to be known for being the “sick girl” so, before hanging out with my friends, I would sit and do treatments and take my tablets at home and then make sure I had my survival kit as I call it (back up medications and inhalers), just in case anything happened to me while I was out. It was like I grew up living two completely different lives.

Tackling treatments

Stacks of cystic fibrosis medicines and treatments, with a lots of coloured pills arranged in a heart with pills spelling out 'CF' in the middle

My biggest struggle was treatment! Having to do two lots of physio, nebulisers and exercise to help keep your lungs clear every day is draining mentally and physically, especially when you’re young; all you want to do is play, go out, be a lazy teenager and stay in bed.

My parents helped me to make it as much fun as possible. I would always be allowed to pick what’s on TV while I do my treatment, as it meant I was focusing on the show and not noticing the 30 minutes of physio first thing in the morning. My younger sister would always try and copy me and pretend she was doing her physio as well, so it meant I didn’t feel isolated in my family.

As I’ve gotten older, I’ve just accepted that I need to wake up half an hour earlier before work to complete my treatments. I think of it as just like brushing my teeth every morning and evening: it has to be done and you can’t start your day or end it until it’s out the way.

Embracing my condition

I am now 23 years old and I have finally come to terms with my CF; it’s not going anywhere and it’s here with me for the rest of my life. I’ve learnt to embrace my condition and I am trying to help younger people living with CF, as well as family and friends who are affected by this, to see that there is light at the end of the tunnel. It’s all about balancing your life around the condition.
Since I started posting about CF on my social media pages, I have had a huge response from other people living with the condition, and also from friends and family of people living with cystic fibrosis. It really opened my eyes to the positives I could make by doing this.

Girl with blonde hair doing nebuliser

I posted a video of myself doing my nebuliser with the Harry Potter theme song in the background, pretending to be the Hogwarts Express, and I was contacted by a lovely mother of a girl with cysticfibrosis. Her daughter had lost interest in doing her treatment and was struggling, but when she showed her the video of me it encouraged her to do her treatment to music.

I have since started posting more of my daily treatments and what medications I take on my Instagram pages, to encourage people who have a hidden disability to not be afraid of showing it off. I never thought I would have the confidence to post about my condition – let alone post pictures and videos – but since doing so I have felt amazing about myself and that I’m showing so many people the struggles we have to go through on a daily basis.

I live a crazy life, as most of us do. I live with my partner and our puppy (so I don’t have my parents reminding me to take my tablets, or shouting up the stairs to remind me to do my evening nebs anymore). I wake up at 4am for work and work over 40 hours a week, and there are days where I have to force myself to carry on and get my treatments done, even if I just feel exhausted, because I’ve realised how important it all is the older I’ve got. I also know how my body responds if I skip a treatment, as I then have to work 10 times harder on the next round. It’s a mental challenge: we need to just think to ourselves that in 30 minutes’ time it’s finished and out the way, and then we can treat ourselves after for smashing that round of physio. I try not to look at anything as a negative anymore. I’m proud of what my body achieves every day, and that’s what keeps me positive.

Every situation is different, and I wish years ago I had realised how important it can be to talk about your illness and just own it. My advice would be to make friends online with other people with CF because we are all in this together and we all need support every so often. I am confident that one day we will have a cure for cystic fibrosis. Until then, I will keep posting on my social media everything about my condition to raise awareness and support those affected by this condition.

Read more from Demi on her blog 'Girl With the Long Hair'. Don't forget to join the Big Yellow Party at 6pm today!

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