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Volunteer Advocate
cf insights cf insights

Coping with the loneliness of CF

Living with a rare disease can be lonely. There are a limited number of people who share in your lived experience, and despite how hard they try, the closest people in your life may not understand your experience and emotions. Cystic fibrosis presents a unique challenge, where those with CF are discouraged from face-to-face contact to avoid spreading dangerous bacteria to one another. There’s a roadblock from connecting with the very people who understand your experience the most. Thankfully, there are other ways to connect and to address those feelings. We asked our community how they cope with isolation, what tools have worked for them, and what they find most difficult:

“The biggest vice I have found was social media. There are so many groups, chat rooms, committees to join, and events to participate in, that you never have to be alone. It’s true, people with CF are advised to stay at least six feet away from each other at all times to prevent bacteria spreading. It’s hard to be told to stay away from the people in life who understand you the most. Through Facebook, Instagram, and other social media platforms with CF Canada I have met so many people across the world living with CF that it has made me grateful to live where I live and have access to the care CFers desperately need.” – Meaghan MacRury

“The isolation of this disease is extremely difficult. Social media both helps and hinders this process. It is a great thing to be able to reach to community and friends. However, the first hand social level is still nonexistent for most. It also doesn’t allow for those that need comfort to receive it. It is incredibly hard to watch others in the community suffer, or pass.”  – Rob Burtch

“I have personally never felt “isolated.” Being able to establish many CF (and non-CF) contacts and friendships years ago because of my involvement with Cystic Fibrosis Canada, Kin Canada and local CF chapters was invaluable. Note that this was before the implementation of the current Cystic Fibrosis Canada Infection Control policy. Although CF persons are presently not encouraged to gather together in person, there are many ways that we can connect and establish support networks.  Although, nothing will ever replace that face-to-face connection.” – Brenda Chambers-Ivey

“The isolation I feel being segregated from others with CF is beyond heartbreaking. I grew up with so many others with CF and loved the bond we had, but since we’ve been segregated, it is a feeling beyond isolation that no one understands better than other CFers.” – Tim Vallillee

“Although I desperately miss the days of CF camps where you could connect with others with CF face to face, I do find online CF groups very helpful when feeling isolated. It’s definitely not the same as being able to hang out with a group of great people who battle the same thing as you, but it’s probably the next best thing.” – Kim Wood

“I enjoy being part of the Facebook group for adults with CF, and I also find it helpful to participate in advocacy initiatives, where I am often put in contact with other people with CF. I also find that my close friends and family are a great resource, because although they don’t have personal experience with having CF, it has also impacted their life in some way, through me.” – Terra Stephenson

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