Learning to Cope While Growing Up With CF

Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.

Dec. 19, 2023 | 4 min read
Lydia-Sand-Headshot
Lydia Sand
Lydia smiling with her dog, Carl, in the kitchen

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. 

A bowl of red JELL-O with the words "CF sucks" written on it in whipped cream

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. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Emotional Wellness
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Lydia Sand has a drive for life and refuses to let cystic fibrosis hold her back. She received a master's degree in public administration in 2016 and currently works on a grant for health care workforce initiatives in Nebraska. Lydia has been a successful fundraiser for the Cystic Fibrosis Foundation since 2001. She's currently a co-chair for ROSE UP, a past member of the CF Adult Advisory Committee, and involved with other efforts in the CF community. A South Dakota native, Lydia currently resides in Omaha, where she enjoys traveling, playing in a sand volleyball league, trying new recipes, and being entertained by her dog Carl. You can follow Lydia's CF journey on Instagram.

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