Talking to parents of young people with cystic fibrosis is one of my favorite things to do. The main reason I find it so special is that I often get to brag to them about all of the things my parents did for me that led me to thrive as an adult with CF.
As kids, we sometimes just want to be let off the hook and take the easy way out, having mom and dad take care of the countless demands that come with this disease. And sometimes, parents feed into those feelings. But whenever I think back on my own parents' approach to my CF, it's the things that made me roll my eyes at the time that I am often most grateful for today.
That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age, so that they have no excuses not to take care of themselves down the road.
When raising a child with CF, a common pitfall I've noticed is how easy it can be for some parents to want to control every aspect of their child's care, beyond the medications and the daily treatments. For example, CF can sometimes be hard to talk about for a child, but if my parents never forced me to take responsibility for those conversations myself, I wouldn't be able to have them so easily today. So, I coughed my way through gym class and organized sports, took my vest and nebulizers on trips with family or friends, and talked to my teachers about the enzymes I needed to take with food or why I needed to go to the hospital. I was the one who had to face the uncomfortable moments of telling my coach I needed a break, explain my treatments to my new friends, rock a mask on an airplane, and ask my college to replace my dusty carpet with tile floor.
It's important to note that I didn't take on all these things right away.
I hated talking on the phone, scheduling appointments, and ordering medications, and I begged my mom to take care of these things sometimes. But as I grew up, my responsibilities increased incrementally, until one day, I was handling it all by myself. My mom still acts more like a consultant to my care -- someone to bounce questions off of and reassure me when needed -- and it's so important to have an advocate like that as you navigate the ups and downs of life with CF.
By the time I was in college, I was going to care center appointments by myself, sometimes even bringing a friend along for fun. Today, my experience as my own advocate has allowed me to tell my workplace when I need a break, to explain to friends why I might be too tired to hang out with them, and to be open and honest about how I deal with CF to friends both old and new.
Some people choose to keep CF a secret, but I've been so grateful that my parents were always open about it. This meant doing my treatments in front of friends during sleepovers, talking about it openly in front of extended family, and asking for accommodations in college when I needed to. In fifth grade, I even picked CF as the topic for a report and brought my vest in for show-and-tell.
Being honest about my CF has opened up so many doors for me in my life. It has allowed me to stick with my treatments and understand what it means to be truly supported. Yes, it was sometimes uncomfortable talking about a not-so-glamorous disease as a teenager, but my best friends have been the people who take an active role in my care: reminding me to take my pills, watching movies through the sound of my vest, and even recognizing when my cough doesn't sound like it usually does.
My parents instilled an attitude in me of not only taking responsibility for how I communicate about CF, but how I frame the conversation honestly as well. Without this, I wouldn't have such supportive friends and relationships, and I wouldn't have the maturity to take control of my health. I can't thank them enough for that, and I truly believe it is the key to living with CF as an adult.
