By Zahra
How do I plan for the future as someone with CF? The short answer is, I don’t. But it’s not as sad as it may seem, let me explain…
Hi, my name is Zahra, I am 20 years old and I have cystic fibrosis.
I, unfortunately, have 2 rare genes so I’m unable to be on Trikafta or any other CF gene modulators at this point in time. My lung function fluctuates, but I would say the average is around 45%. I also go in for hospital admissions every 2-3 months.
Like most kids over the years, I dreamt and planned what I wanted to do when I was an adult. I was going to be rich, live in a mansion, have a swimming pool, be an actress with a hot husband, 200 cats and dogs and have 100 kids.
However, when I went to school, I realised I wasn’t like the other kids. I had to take tablets when I ate, and none of the other kids had to do physio in the morning before school. Then when the class got taught about healthy eating, I was excluded and was sent to another classroom because it didn’t apply to me.
I always knew I had CF, but I didn’t know what it was actually like for a person without CF.
I remember specifically using one of the school’s iPads during class and Googling CF. One of the suggested search results was, “Cystic fibrosis life expectancy.” I clicked it and as I read, I felt all my dreams falling with the tears down my cheeks. Although now looking back as an adult, even if I didn’t have CF, I wouldn’t have been able to have 200 pets and 100 kids, but this was the end of the world for 10-year-old Zahra.
At the time I believe Google said about 30. For years I was so caught up in the fact that I wouldn’t live as long as my friends. It’s all I thought about. It consumed me.
Sometimes I would look forward to something but then I ended up in the hospital and I would be so disappointed. I would think, “Why do I look forward to anything, I only feel sad when I can’t do it.” So I stopped planning things, I stopped going out. I was so caught up in what I couldn’t do. It’s only been in the last 3 years that I’ve worked on bettering my mindset and mental health. I’ve realised that yes, I will probably not live as long as my friends, but that doesn’t mean my life is over now.
I was living like my life was already over. My life isn’t over until the day I die. I choose to not just exist, but live. I find the positives in life. I don’t set unachievable goals for myself. I don’t plan my whole life. I live in the now. I do set goals for myself, but my goals change to fit my ability and needs. I focus on what I can do. I still think about the future, but I don’t have my heart set on it. I have hope that one day in the future there will be a “miracle drug” that I’ll be able to have, or better yet, a cure, but I don’t plan my life around the “what ifs” of life. I live in the moment.
At the moment, I love Star Wars, so I’m watching all the movies and reading books about it. To stay present and enjoy life, I do various things: I look after my little sister Hazel, I get my nails done every 3 weeks, this year I’ve started journaling, I enjoy knitting, I’m learning how to crochet, and I hang out with friends and family!
* Advancements in treatments have, over the years, undoubtedly led to better outcomes for those living with cystic fibrosis. However, while we recognise these advancements, we also acknowledge that there are still people living with CF who cannot access these treatments and more work is yet to be done.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
