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Connecting with Other CFers

Let's talk about those CF connections! Do you feel like it is easier to talk about your disease with others that also have CF? How do you find others with your rare disease?

  1. I don't know anyone else with CF. But this forum helps.

    1. I didn't know many other CFers until a number of years ago. And at times it was really isolating. I'm glad that technology has made it so we can connect with other CF patients - it is a unique perspective. And I'm glad that this forum helps.

    2. it's good to know people who know what we go through. I'm not on here a lot, but it helps

  2. Idk many others with cf. Besides my twin. I tried to talk to several people online who have cf, but eventually they get more distant and talk less. I don't have any real friendships with other outside the family cf people. Just try to help give advice when I can to those online asking for info or help. I wish I knew someone but I doubt anyone would ever want to be my friend in the first place.

    1. I'd love to! I can totally relate to that. It's easier for me to talk on texts more than doing so in person but I'm trying to change that and be more outgoing, going to social situations out of my comfort zone. I've gotten better than I was in 4 years but I do still get shy and hesitant initially. I'm definitely friendly and a good listener from what I've been told which I was assured isn't a bad thing. I'm trying to work on myself to get rid of my social anxiety because I'm about to start medical school next month

    2. hi my twin and I are to we are walwaus shy and people always ask us if we can talk which is kind of embarrassing. I always used to write the teacher letters and hand it to them instead of talk because that how shy I was. I always loved writing. I guess I'm sort of now a "Texterovert" (and introvert who can talk easier through writing or texting.) I didn't know what an introvert was until this year. I always thought I was just shy. But idk. Anyhow it would be nice to be friends with you, if you wanted to be, you sound very much like a kind person to know. 😊✝️❤️ Very understandable and relatable. My twin and I have been told the same thing, by some adults, but other people who are my age they all make fun of me and my sister, and in school even try hitting us with frizbees during gym class when we went to school.

  3. There used to be a social media platform just for CF teens and young adults about ten years ago called CFone. It’s mentioned in this: It was so useful for my CFer as a teen, but it would still be so helpful to connect this group of people who should not be together in person.

    1. wow that would be so cool. Thank you so much for the url link. I will definetly check it out! And tell my sister. We don't have anyone who ever thought to stay in contact with us after graduation years ago, and even then we didn't really have any friends, just people who would sometimes come up to us and talk to us about, and we'd sit and listen and they'd go away and go about their business. It would be ok to have the friend who is relatable, you can't exactly tell someone about lung problems who doesn't care enough to listen or know what you are talking about, or even relate on topics from such.

  4. Hi there! I absolutely relate with you on the textovert quality because I find it easier to write than talk. I end up fumbling when I do that and since I'm multilingual with Hindi being my mother tongue but English being the second most spoken language in India very well, I keep changing between these two languages so much I find it annoying. I've been told I'm a good writer and i enjoy writing so I've leaned into it and made it my strength! As for college, man those people making fun of you are mean. I guess it comes from the fact that they basically can't understand you and I get that. I struggled a lot in junior and senior year of high-school because my classmates were mostly least bothered or completely not understanding of my health issues so I felt tormented. Fortunately I had my best friend (since primary school) who was there for me. As for college, it's been a month and so far people seem nice and I befriended some nice girls but this is only the start so obviously everyone is their best selves at the moment. I'm worried people will show their true colours and I'll be alone again and you absolutely need people to get through med school.

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