Understanding My Experiences with CF
Last updated: September 2021
Not too long ago, during one of my regular face time calls with my mom, I was explaining to her how frustrated I was with the setbacks that living with cystic fibrosis cause. Living with CF during the midst of a pandemic has only heightened my acute awareness for the stress and anxiety it has the potential to cause, but this wasn’t related to the virus. It was related to something menial and something that was essentially non-monumental. She responded with love and said, “It’s another layer of the onion, honey.”
The ‘peeling the onion’ idiom is fairly well known. As you peel back each layer of the onion, you are one step closer to the core of understanding why, or what, about a subject. And the more knowledge and information you gain about a certain subject, the more deeply you delve into discovery.
Realizing I was different
It makes me think a lot of my childhood. My parents did an amazing job of making CF seem as ordinary as possible. The few hospitalizations I had were filled with fun memories and when we had to drive the two and a half hours to the doctor for check-ups, my parents made it fun by letting us pick what we did while we were there. My favorite part was picking where we ate. I’d squeak, “We’re eating at so and so!” as my pulmonologist checked my tonsils and nasal passages. For me, as a small child, CF was more a side character. I knew I had it. I knew nobody else had it. And my parents did everything in their power to make it feel normal to me.
It wasn’t until I was a bit older that I realized having CF is not normal.
In my childhood, getting ready for sleepovers at a friend’s house required a lot of planning that I was oblivious to as a child. I couldn’t go over at the same time as my friends because my dad would need to do my treatment and my mom always had to talk to my friend’s parents about what meds I needed to take, what time to take them, and what to do if I felt ill. When I realized that none of my friends had to do the same thing, one of the first layers of the onion began to peel off.
Coming to terms with my infinite layers
Fast forward about a decade and I’m a freshman at university. I had a dream about what I wanted to do. Unfortunately, I learned more about what it was like to work in that field, I quickly realized that due to the restraints and requirements placed on me by CF, that wouldn’t be in my best interest. I floundered for a bit but ended up choosing a study program I loved and enjoyed. Still though, another layer of the onion peeled off.
These moments would happen on and off as I grew up and each time the same thing would happen. Whenever these realizations would hit, my eyes, as big as saucers, would fill with tears as I looked at my parents. They would hold me close and say, “It’s another layer of the onion, honey.”
As one would expect, the older I got, the onion layers became fewer, but they have never disappeared completely. When I was talking with my mom, as I stated earlier, I remember crying and asking, “When are they going to stop? Haven’t I run out of layers, yet?!” I was heartbroken and exhausted and as I looked at my mom, I could tell she was heartbroken for me.
Accepting the unforeseen annoyances of CF
It is hard coping with the unexpected stressors that happen while living with a life-threatening illness. As soon as I think I have something figured out, one of two things happens. Either some issue that had never crossed my mind peaks around the corner and squeaks, “Yoo-hoo!” Or an issue that I thought I had accepted rears its head again and my brain gets whiplash from the shock of it all.
One thing that I am still in the early stages of beginning to accept is that living with an illness requires an ever-evolving state. Nothing is stagnant. You come to expect the unexpected even though the thing you want most is consistency. When I began expecting that things were not always going to go according to my (amazing) plan and that there would be inevitable twists, it helped me process the emotions when another layer of the onion peeled off. I still grieve over what cannot be, but instead of focusing on that, I do my best to concentrate on what is and what can be.
I won't let CF hold me back
I can still hope big hopes. I can still dream big dreams. How those dreams come to fruition will be different than I anticipated, but I don’t allow that to take away from my hopes.
As each layer of the onion comes off, my heart becomes a little more tender and my determination to do the best I can, for me, becomes a little stronger.
Have you learned to accept the uncertainty of your (or your loved ones) CF diagnosis? Share in the comments below.
Have you participated in clinical or market research before?