Calling all CF parents! You may have heard of a Yes Day, but have you heard of a CF Sucks Day?

I was diagnosed with cystic fibrosis at age 9. With a diagnosis at that age, I can remember a life before CF treatments and pills. Upon my diagnosis, my parents and I came up with the motto, “get smart and stay positive.” To their credit, they didn’t want me to use CF as an excuse or a crutch to get through life. For example, doing my treatments before school didn’t equate to extra TV time. 

While having a positive attitude is great, allowing space and time for being sad, angry, and having self-pity can be just as important. Seeing that I sometimes struggled as a kid to uphold our motto, my parents created the idea of a CF Sucks Day. These days had rules — I could complain AS MUCH as I wanted about having CF (or anything, really) and my parents couldn’t say anything about it. I also got to have special treats to create a celebratory attitude around the day that reinforced it was OK to complain about CF — it’s not an easy disease. One of my most vivid memories of a special treat was a big bowl of JELL-O. I got a spray can of whipped cream and wrote ‘CF Sucks’ on it. Apparently, I lacked some creativity at a young age on how to maximize my asks for dessert. 

There was never a set timeline for when I had a CF Sucks Day. It could occur multiple times a year or each month. I even had a couple CF Sucks Days during college. I particularly struggled in college with CF and all the mental health aspects that went with it. So, this was a way that I could be sad but also involve my roommates. Once, we baked a cake together and just celebrated that life has some not-fun moments. While I don’t really have CF Sucks Days anymore, the motto of “get smart and stay positive” has continued to drive my life, and those days helped shape the way I viewed and coped with CF growing up. 

While some may wonder if having days of sadness and anger will lead to being stuck in that mindset, I argue the opposite. As a kid, it allowed me to know that my parents knew CF sucked for me.

As an adult with CF, I recommend this approach for parents of kids with CF who might be struggling with some big emotions around the daily grind of the disease. Create some structured space where it’s OK to have emotions about CF. Let them enjoy some special treats, whine, and complain — the biggest thing, in my opinion, is to not comment. I think I did a good job testing my parents on this part! This idea might not be for everyone, but for me, these days created a bright spot while navigating growing up and managing CF. 

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