How to Stay Connected in a World of IsolationPosted on February 12, 2018

by Stacy Carmona 

Living with a disease like cystic fibrosis can feel very lonely at times.  There aren't too many people in the world who truly understand what it is like to deal with this illness, which is why those of us with CF share such a special bond. I have CF and have been lucky enough to have some amazing CF friends throughout my life who have been an important part of my support system.  Those friends have taught me life lessons that I will carry with me forever.  Even though some of my CF friends have passed away, I cherish those friendships and feel that they have helped me tremendously in my CF journey.

The unfortunate reality for those of us with CF is that we can't physically be near each other due to cross-contamination risks, so we have to get creative on how we interact with one another.  Of course, I wish that we could get together in person, but with the technology today, face-timing with a CF friend can really feel like you are in the same room.

Aside from the common social media platforms like Facebook and Instagram, today there is a robust online CF community which includes: mentor programs, chat rooms, virtual conferences, blogs, discussion forums and websites like this one which includes a forum for you to share your thoughts.  Unlike 10 years ago, today, it is fairly easy to virtually connect with someone else with CF.  There are several newer programs initiated by the CF Foundation that are dedicated to helping nourish the connections between those of us with CF.  The CF Foundation recently launched a mentoring program called "CF Peer Connect", where trained CF mentors connect with CF peer mentees to help guide them through some of life's challenges with this disease. The CF Foundation also started some virtual conferences for adults with CF to attend on their computers to connect with others around the Country about various CF topics.

I was excited to be a part of the planning committee for the first-ever "Breathe-Con" virtual conference in 2016.  It was quite an experience to see hundreds of CF adults come together on their webcams and connect with each other via panel discussions and breakout sessions.  During that conference, I could feel the energy from so many others that are in this fight with me.  It was an experience that was incredibly impactful for me and many others who attended.  After the conference, I heard from many CF individuals that this was the first time they had ever spoken to others with CF and it was a very comforting and positive experience for them. Seeing how much this connection was both needed and appreciated by those of us with CF was very eye-opening for me and I realized, even more, the true importance of this special connection.

I became a peer mentor for the CF Peer Connect program in hopes that my experiences with this disease could help others, and I have been connected to some amazing CF individuals.  My relationships with my mentees have become a very special part of my life.

As a CF Patient Advocate, I get to speak to others with CF on a daily basis, and sharing my story and hearing how many others are going through the same exact struggles, is very therapeutic for me.  I continue to encourage others with CF to get connected to the robust CF community and in turn, to hopefully feel less alone in this journey.  

 

 

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