Benefits of Social Media
People with cystic fibrosis, like myself, are supposed to maintain a distance from others with CF. Obviously, siblings can’t always do that, but for the majority of the CF population, we are advised to not attend indoor CF events (unless we are THE invited guest with CF) and to keep a distance of 6 feet from anyone with CF outdoors and in general. The distance is to keep us from spreading the bacteria and infections in our lungs to each other. To read more about this rule read: The history of the 6-foot rule.
Using social media to connect with others with CF
This does mean we have to seek non-traditional methods to maintain close friendships with people with CF. Some clinics have online web-based support groups on platforms like Zoom and Bluejeans. The CF Foundation hosts several online webinars and MiniCons for people with CF to meet safely and share support. This is also why Health Union created Cystic-Fibrosis.com where people can share and support each other.
Dealing with social isolation
Still, isolation is one of the toughest aspects to CF, in my opinion. So many other diseases have in-person support groups and ways of meeting others with the same disease or medical problem. Having a safe place to come together physically and share triumphs and hardships is important.
Before we knew about the 6-foot rule we had face-to-face contact between patients. However, we can no longer safely do that and I wish that could be different. I’d love to be in a group of people with CF and sit around chatting about the day-to-day stuff. But, since we can’t, a lot of the community tends to be online.
The online CF Community is strong and loud! I think because we are looking for ways to share, connect, meet, and spread awareness. I started my personal blog in 2012 and, since then, I have met so many others with CF. Some of my online relationships have grown very strong over the years. Sometimes I forget I haven’t met them in person because our friendship is so strong!
Why social media is important to me
CF can be a very isolating disease and it can definitely impact a person’s mental health. Mental health is another area of concern with CF as patients can be struggling with depression, anxiety, and other mental health issues.
Life with CF can be scary, exhausting, and difficult to deal with. I talk to my family and friends a lot about my concerns, but talking to another person with CF helps, especially when it's a big life moment or decision (like transplants, surgeries, contracting new bacteria). It helps to be able to ask questions and hear others' experiences with the same obstacles and triumphs.
Being able to build friendships with other people with CF, share experiences, and raise awareness is the main reason I LOVE social media. I’m thankful for all the online sites and communities that help us promote that bond.
What about you?
Why do you use social media and which platforms are your favorite?
Which social media platforms do you use? (Check all that apply)
Have you (or a loved one) been experiencing any negative side effects from Trikafta?