My Open Letter to Cystic Fibrosis

Hey Guys! So, I have recently joined St John's Ambulance service and I am going to a few sessions to get a feel of it all before I complete the 'proper' training. Yesterday, I attended my second session but ironically it was on ' BREATHING PROBLEMS' and what came up? CYSTIC FIBROSIS OF COURSE! Now, I usually don't let people know I have CF right away as I like to know how to approach the subject depending on the group of people, but this time I had to voice that I had Cystic Fibrosis.

As a CFer, hearing that many people don't live with CF until their 20s and that they lead 'life-limiting' lives can be hard, especially when you know it is not always the case. Unfortunately, it can be the case sometimes but due to advances in treatment, things are always progressing. From this, it has inspired me to write an honest, vulnerable and open letter to Cystic Fibrosis and how I feel about it.

So, here goes...

Dear Cystic Fibrosis,

For 13 years of my life, you kept quiet. Only speaking when spoken to, only presenting itself when asked. I knew of you, but I didn't know you. I knew I was born with you, but I didn't know why. I didn't know of all the challenges that were yet to come. Like Pandora's Box you exploded into my life one summer, and that changed everything.

Did you find it acceptable to come into my life and change everything? Did you like making me feel like the last 13 years accounted for nothing? I had never known Intravenous Antibiotics before, I had never known oxygen masks, cannulas, long lines and much more. I was scared, frightened and intimidated. I felt like you were paying me a long overdue visit. I constantly asked myself if I had done something wrong? If the medication wasn't working anymore? But I was yet to learn that doubt is one of your many disguises.

You have presented yourself in many forms over the past few years. Doubt, anxiety, sorrow, hopelessness... You like to trick me into thinking that I am not getting anywhere and that I will be unstable forever. When I am well, you are like fog in my mind - constantly making me think you will turn my life into a deep dark abyss.

You have taken away friends from me, families and other friends. You have made me encounter the lowest and darkest times. You have made me feel like a failure. But there is so much more that you don't realise you do...

Cystic Fibrosis, you make me appreciate every waking moment. I have encountered some of the most wonderful people all down to you. You are supposedly meant to divide people, but you actually unite people. We are stronger, we are fighters and we are determined.

I laugh, smile, love and love so much more harder than you could possibly imagine. I inhale and exhale deeply each day and feel so lucky to do so. You rob innocent people of their lives but actually, you have made so many more people live theirs to the fullest. I dream of wild adventures, making new friends and making memories all because of you. I grab life with HANDS AND FEET all because of you.

In my darkest days, I get through them because I know that light can come out of them. I want to help people, inspire people and educate people all because of you.

See, you have these disguises like doubt, grief, sorrow, death and misery. But I overcome them with positivity, laughter, hope and happiness.

Like Pandora's box, you unleash the evil of your cruel disease from time to time... but I will always overcome you no matter what. No doubt you will unleash yourself again sometime, but I will never go down without a fight.

So, really this is a thank you Cystic Fibrosis. For making me into the determined and ruthless fighter I am today.

I am not your victim, but you are mine.

Nubi Jones.