Why take advice from me?

I can't see some of my very best friends in person. We can't be in the same indoor space and -- when we are outdoors -- we need to maintain a distance of at least six feet. I wear masks in clinical settings, because I never know who is walking past me in the hall. If I were to meet, touch, or be within six feet (coughing distance) of another person, we could pass germs to each other that could potentially be deadly. 

Sound familiar in the current COVID-19 environment?

Even when one of my friends is sick, even critically ill, I can't see them. I sit at home waiting for a text or social media update. When one of my friends passes away, we can't congregate. I grieve alone at home.

Sound even more eerily familiar?

This is a temporary circumstance for everyone during the COVID-19 global pandemic… But, it's a forever reality for all of us living with cystic fibrosis. I will never meet some of my very best friends face-to-face.

Does it feel unfair? Always. But, here's the good news: We all can work together meaningfully, celebrate together, and connect emotionally without ever being in the same room.

I wanted to take this opportunity -- when the general public can best understand these feelings of isolation -- to share my experience helping to create our first ever BreatheCon in 2016. This virtual event was created, planned, and executed by adults with CF. We had an idea for a multi-day conference to bring people with CF together. But we had no idea what that would look like, or if it would even work. I'll admit I was skeptical.

The BreatheCon introduction began, “For many, living with cystic fibrosis means living isolated. Cross infection. Hospital stays. Financial hurdles. Travel constraints. Many people with CF are unable to connect with those they may relate to the most: other people with CF.” We met for two days in a virtual beach environment. We had keynote presentations, chats, small group discussions, yoga, and mindfulness activities. We were attempting to create not just an event but a community. The response was overwhelming and exceeded our expectations. 

BreatheCon was a response to feelings of isolation, complicated by cross infection, hospital stays, financial hurdles, and travel constraints.  I'm not sure there has ever been a time -- or will ever be a time -- that this is more relatable to a non-CF audience. Perhaps you can now better understand how monumental this event was. The first time some people with CF ever spoke to another person with CF face-to-face. Planned by a group of people who have never met -- and probably will never meet -- each other in person. Perhaps you'll even understand why I can't watch  the recap video without tears coming to my eyes. It's that powerful. And, it worked. It really, really worked.

Virtual events have proliferated throughout the CF community since this initial BreatheCon experiment.  We've made new friends. We've deepened existing friendships. We've cried. We've laughed. We've had parties and played games (Jimmy Fallon's ”box of lies” remains my favorite). We've exercised and danced. We've shared our intimate hopes, fears, and we've trusted each other to open up about some pretty taboo subjects (the MiniCon on sexual and reproductive health, anyone?). We've learned about CF research. We've created art and harmonized in song. We've inspired and been inspired. We've accomplished. We've felt deep camaraderie. Separate. But, together.

So, to all those of you “living virtually” for the first time, you can do this. Be creative and take risks. You need connection during this time of social distance, just like people with CF need connections with those that truly understand. I've already hosted a virtual third birthday party for my son with our family. Was it seamless? No. But we laughed, we learned, and connected. Distant friends are connecting virtually because -- right now -- it doesn't matter if you live down the street or across the country. I've seen virtual happy hours and so much creativity already.

You may be self-isolating but -- thanks to technology -- you don't have to do it alone.

So, go. Reach out. Connect. Experiment. Live while social distancing. And, if you're struggling? Just ask an adult with CF. We're trained for this.

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