Making Connections in the CF Community
When I first had my daughter, one of the things that truly made me feel energized was connecting with other new moms. I met a group of women in our neighborhood with their own July-born babies and we began to meet weekly at a baby clothing consignment shop. We quickly bonded over shared experiences of new motherhood, and I’m happy to report we all still talk regularly.
The cystic fibrosis world is no different - there are parents out there wanting to meet others to commiserate with and connect to on a personal level. However, it’s trickier to meet other CF parents, with the risk of cross-infection being the most obvious barrier. I knew if I did meet a fellow CF parent, we couldn’t bring our kids with us, and this was definitely a factor that prevented me from trying to engage. I also wanted to specifically connect with parents who had babies or toddlers with CF, but with cystic fibrosis being a rare disease, this limited the pool of potential people to meet.
Connecting on social media
I turned to social media, which ultimately became the most helpful tool for me. I quickly learned some important lessons. First, people who currently have 12-year-olds with CF had very different experiences than what I was dealing with as a mom of a young baby. They had a wealth of knowledge and insight but just completely different life experiences at that moment.
Therefore, I began following a few Instagram accounts of fellow CF parents with kids within 1-2 years of Margo, my daughter. I chose this specific age range because it really helped me connect to them as a fellow parent first and as a cystic fibrosis parent second. I personally engaged with these moms - I asked questions, applauded milestones, and shared some of our own experiences with them.
Following those that bring me joy
Second, I realized that other parents’ experiences with CF were sometimes different than mine, both in the physical manifestations of the disease and their personal outlook on it as parents. For my part, I was not seeking a support group. My outlook on CF has always been realistic but positive, and I discovered that it was important to me to connect with others who shared that mindset.
There were a few parent groups on Facebook that I joined and ultimately left. The realities of CF can be draining and I decided in order to keep my spirits high, I needed to be selective of the personalities I engaged with. I made a rule to only follow accounts that brought me joy or taught me something about CF.
Connecting with other cystic fibrosis moms
I became friendly with three CF moms through Instagram, each of them having kids within 1-2 years of Margo. The four of us formed a little group. Fast forward to today, and I talk to these women every single day. We text, we talk on the phone, we Facetime. It doesn’t matter that we all live in different states. We all have toddlers, and our toddlers all have CF.
I can tell them about dealing with a public tantrum at a store and know they can relate. We collectively groan when one of our kids doesn’t nap on a particularly long day. But they also understand the realities of CF. Whether it's when one of our kids refuses to eat a meal and therefore doesn’t get adequate fat and calories, or when they have a successful quarterly clinic visit. They’ve taught me the best tricks to teaching Margo to swallow her Creon, and I’ve suggested our preferred way to administer Orkambi (hint: chocolate syrup). We celebrated when Trikafta was approved by the FDA. They are the only other people who can truly grasp the highs and lows of this disease, and I feel extremely lucky to call them friends.
Finding where you fit
CF can be an isolating disease for the patients and for the caregivers. Long before COVID, we had to become accustomed to social distancing and canceling plans in order to prevent being exposed to dangerous germs. My advice to fellow parents seeking a place within the CF community is to first define what is important to you.
Do you want support? A friend who understands the joy of toddlerhood AND CF? Someone with whom to navigate sending your child to public school for the first time? Define that need and prioritize it. Don’t be afraid to reach out to someone via Instagram or Facebook to ask a question or share a big CF milestone. It might take time, but eventually you will find the right group of people for you to engage with and ride the highs and lows of CF.
Learn more about connecting with others on Cystic-Fibrosis.com.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?