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Volunteer Advocate
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Cystic Fibrosis Friendships

We all know that infection control policies make it difficult to be friends with other CFers, but we also know that these friendships are like no others.

We talked to the CF community about how to maintain these friendships online and here’s what they had to say!

  1. “My favorite way to connect on the web with CFers is Facebook. I find Facebook is the most versatile place available to us where we can share our feelings, successes and upsets that come with CF as well as follow the progress of others battling the disease alongside you. Facebook allows you to be any kind of friend you want, you can be a casual friend and follow posts but choose not to interact, you can be somewhat of a friend and ‘like’ posts and say ‘happy birthday’ and then there is the real, 100% in it to win it friend. These are the people that don’t give up, they message you, comment on your posts, send words of encouragement on rough days just to check in and let you know they’re there for you. Lastly, Facebook allows you the opportunity to relate. Seeing photos of someone struggling like you are, being admitted into the hospital at the same time as you and knowing that someone out there knows just what you are feeling at that exact moment is a comfort that is very hard to come across and doesn’t happen often.”
    – Meaghan MacRury
  2. “Facebook is the typical way that I reach out to friends with CF since it is really the ONLY way I know of online, but these friends are a very limited small group since I have not been able to be in close proximity of another breathing Cystic friend for the past 18 years. I’ve lost so many friends to CF in my 49 years that although I am happy to befriend fellow CFers, there hasn’t been a real way to meet anyone in person since I was a young man.”
    – Timothy Vallillee
  3. “Before the creation of the @CFcanada instagram account, I wasn’t looking a lot to be friends with other CFers. But with the different people participating on your instagram, I realize there are many people who are like me and know my many CF struggles. I haven’t really become friends with them but they give me, indirectly, support and because many of them are older than me, it gives me hope that life with CF isn’t as bad as I’ve imagined.”
    – Emma Fontaine
  4. “Facebook groups are probably my favourite way to meet new CFers and keep in touch with my current CF friends. It also has allowed us to start specific groups such as “The Breathing Space – A place for Canadian adults living with CF” and “Cystic Fibrosis Mummies” where you can vent, share, ask specific questions or give advice which is so valuable.”
    – Kim Wood
  5. “My fave way to use the web for be friends with fellow CFers is probably through Facebook. I am a part of a few different CF groups on there and enjoy reading about other’s stories. Knowing someone is going through the same things as you and just gets it is really comforting.”
    – Mackenzie Norris
  6. “I’ve connected with CFers through both Facebook and Instagram. I like them both for different reasons. Through Facebook I have established an online support group of CFers (which is excellent since we can’t meet in person), and it’s been great for all of us. Talking regularly with other CFers makes you feel like you’re not alone and we can also trade tips on treatment, dealing with doctors, navigating school and jobs. I really can’t stress enough how important this is.  Instagram is another unexpectedly useful tool. I have connected with CFers across the world on Instagram. It doesn’t offer the same close-knit feel that Facebook does, but it’s still fantastic for the CF community.”
    – Abby McFee
  7. “FaceTime/Skype/Tango for face to face ‘visits’, when energy is good. When breath is short and talking is challenged, I can be way more ‘long-winded’ and chatty, with text or real-time messaging of some sort!”
    – Erin Sullivan
  8. “It’s been an interesting experience forming CF relationships with people on social media.  I’ve had a lot of private messages with some individuals who find my page inspiring, however, I always remind them that I haven’t had the same challenges others CFers face due to being relatively healthy my entire life.”
    – Jordan Leibel
  9. “The easiest way for me to connect with other CFers has been through Facebook because I can either join a group that focuses on one area of life with CF (like a group for women with CF who are mothers or trying to have children), or I can connect individually with others through messenger.”
    – Terra Stephenson

Have insights you would also like to share? To be quoted in our blog please contact Terra at tgillespie@cysticfibrosis.ca

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