Connecting to Others with CF: Platforms and Programs (Part 1)
We live in a digital age. Whether that has an overall positive or negative effect on society is debatable. However in the CF community, technology is an important rectification to the unique and isolating infection control guidelines we follow. People with CF are encouraged to stay six feet apart at all times to reduce the risk of cross-infection--that’s definitely a barrier to making quality CF friends.
Technology is our friend
Living with CF during the time of social media explosion, I see how it’s changed the nature of relationships among us. Growing up, I didn’t know a single person with CF--now I know many! Without iMessage, Facetime, or the many social media apps downloaded on my phone, I would lack friends that help me cope with living with CF. Therefore, CF friendships are vital in my opinion--but how do you stay connected when you can’t physically interact, and is the connection more beneficial than not?
Follow along with this two-part series, where we will list and link some amazing social media platforms and programs you can use to connect. In part 2, we will discuss the benefits of having CF friendships to our mental and physical health, as well identifying when it’s time to put down our screens.
Ways to connect & make friends with CF
The good news about our social media obsession is that there are many platforms to pick and choose from. Whether you choose to communicate with friends one-on-one, in a group setting, or through virtual events, each platform can encourage a sense of belonging.
One on one
Some of the ways to connect individually between people with CF include:
Any other ideas? Share with us below! Consider the ways you can use one of these platforms to check on a CF friend and tell them you support and appreciate them today!
Other platforms and programs that are tailored to connecting groups of people with CF are also a great way to have fun, be social, and gather different perspectives. Starting here, Cystic-Fibrosis.com’s goal is to provide information but also to connect the CF community members and form support. Not a member of Cystic-Fibrosis.com yet? Consider joining to add the conversations on the forums on our site.
There are many other groups on Facebook surrounding specific CF niches that can be a great resource and support system. Personally, I love Facebook groups that are focused on motherhood with CF. In addition, I have found a couple groups for CF women only. I would be lost without the wealth of information and experience from these groups. Do a simple Facebook search and find a group that best interests you!
Virtual events are becoming much more popular in the CF social scene--and I am here for it! Since the infection control guidelines really put a damper on in-person events, virtual events are a great way to feel included in a larger community engagement. It is difficult being physically and emotionally distanced from the community that understands you most.
Waiting to be heard, adults with CF have tried to communicate their feelings of isolation. Thankfully, the Cystic Fibrosis Foundation responded by creating virtual events such as BreatheCon, ResearchCon, and CF FamilyCon, annual conferences for people living with CF and their families. It’s as close to the real thing as you can get! Pour yourself a drink and socialize!
How do you make CF friends?
How do you prefer to form friendships with others with CF? Share your tips on staying connected below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?