Turning Thirty With CF Gives Me A Lot of Feelings
I have cystic fibrosis, I'm about to turn 30 in a few short weeks, and I have A LOT of feelings about it. I’m excited and hopeful but also filled with sadness and worry. I’m as far up as I am down. My emotions are truly chaotic when I think about blowing out 30 candles on my imaginary birthday cake. Cystic fibrosis is to blame for the Peter Pan Syndrome that’s been plaguing me.
Mixed feelings towards turning 30
I always harbored mixed feelings towards aging and birthday celebrations for as long as I recognized “growing up”. I’ll be honest, it is confusing. On one hand, I’m pumped to see what plans may come my way and to celebrate with my sweet family. (Our birthday tradition is going out to Hibachi dinner, but obviously we might have to skip that outing this year due to COVID.) As a mom, I’m thrilled to receive homemade toddler crafted cards signed “Fenn and Sybil”. (Sybil is our cat.) I know in my heart, that birthdays are a beautiful blessing that should be enjoyed and savored. My birthday will be a fun day--I know it!
However, there’s a small part of me that feels the emotional weight of birthdays in relation to my cystic fibrosis. No matter how hard I try, I can’t shake the disappointment and uncertainty another birthday brings. The sadness of the passage of time is very real when you live with a progressive disease or a disease that is expected to get worse with age. Aging has not been kind to me in the past--maybe I have PTSD due to aging. I’m nervous to turn another year older and more specifically, enter a new and unimagined decade of my life.
Life expectancy of CF
There’s something unique about this upcoming birthday that makes it a significant milestone--and is probably adding to my despair. When I was born in 1990, the life expectancy for someone living with CF was around 29 years old.1 Not so encouraging, is it? Thankfully, the life expectancy has reached 47 years old as last detailed in the 2018 CFF Patient Registry.2
Although over the last couple decades, the life expectancy for CF has sky-rocketed thanks to new technology and therapies, it doesn’t necessarily apply to me. Life expectancy is the number of years a person is expected to live based on the year they were born. The life expectancy in 2018 applies to babies born in 2018. As an adult, I have 29 years of damage in comparison to those sweet babies newly diagnosed. This is the sullen and progressive nature of CF.
Fearing the unknown
However, this birthday marks another equally important reality: I outlived my life expectancy! I’m here--when so many are not, and I’m doing fairly well and that IS encouraging. There’s been a lot of healing this year--both physically and mentally--thanks to a highly effective treatment that is giving me hope I will prove that expected value far too little.
I know that I can’t stop time and come September 14th, I will indeed turn 30. It’s always been hard for me to picture myself in my 30s--almost impossible if I am being frank. I feel like I just barely escaped my 20s, and I managed to come out on top, somehow. Truthfully, I have so many questions about what this upcoming decade will bring me. How would my body feel and function? What would my day-to-day life look like? Would I be more sick than healthy?
Celebrating 30 years with cystic fibrosis
It’s so hard for me to picture what is to come when it’s uncharted territory with no expectations to guide me. But, I am going to try my hardest to make this decade a healthy and thriving time in my life. More specifically, I’m going to take a step back this birthday and bask in the joy of making it this far, because what is coming will come, no matter how many breaths it takes to blow out all the candles.
Has CF affected the way you feel about aging and birthdays? Share your thoughts and experiences in the comment section below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?