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    • #12134
      Tré LaRosa

      I was recently talking with a friend and realized that almost any time I meet somebody, they know within the first couple of minutes that I have CF. This is due to my having tattoos relating to CF, and the fact that my writing and day-time job are also centered around CF. I’m not so much saying it quickly just because, but because it’s so much a part of my life that it’s hard not to bring it up quickly. I don’t really know how to go about this differently or that I even should lol. It’s just something I’ve thought about. This can also be hard for men to be open about something so emotionally difficult.

      1. How quickly do you tell people you’re friends with about your CF?
      2. Do you prefer to being open about it early on in friendships or later?
      3. How open are you about CF?
    • #12143
      Paul met Debbie

      When I was young, I thought this was a problem. Not many people knew about cf, so that made it harder I thought.
      So I just didn’t tell. I also felt it was part of my privacy. So, if people asked about my coughing, I simply said I had a cold. Or that I had chronic bronchitis. Or even astma. Astonishing how easy peoples curiosity is satisfied. If they have a “heading” under which to place your problem, that usually is sufficient for most of them. (my wife and family-in-law knew the larger story, but actually, it comes down to the same, it’s all a story and not more). I worked for 15 years and never felt the need to tell any of my colleagues – it was fine that way.

      Now (I am 55) I sometimes tell, sometimes not, depending on the need of the person talking to me. Sometimes they seem to need a concept to be satisfied so I give them the word cf. Cf is more wellknown now. But actually, that does not make a lot of difference. Telling or not telling now I feel doesn’t really matter.

      Cf is just a label. Ask yourself: do you really “have” cf? Who has cf? You, your body, your selfimage, your ego? Are you attached to it? Could you do without it? When do “you” have cf? All day? Every hour, minute, second? Or only when you think of the word or concept? Or read about it? Or talk to your physician. What about when you sleep? Do you have cf then? Or when you are really cought up in something creative? How real is it? And when you have a coughing fit, do you feel you have cf then, or do you just have a coughing fit?Does it really exist or you do believe it into existence out of habit, because you believe some one who told you when you were young, and it got its own life and now you are perpetuating this believe?
      If you take a close look, other than the day when you genetically test for it and you get the result of your genome, “cf” is not a real thing. It is a useless and (i think) damaging story that needlessly takes away some of your innate happiness. Just get rid of it. Clean your thoughts. Tidy up.

      Furthermore, cf is so different for every patient, it hardly has any meaning to tell anyone “I have cf”. Even now, when more people know of the word and the existence of the disease, what does it really mean if they nod and say: Aha, so that is what you have? Do you have any idea what is going on in their heads at that time? What do they know, or understand? And does it really matter to you? Is there really anything to know?

      It is my true experience that I don’t have cf. Doctors might tell mw, but it is not my life-experience. I have some health-related issues (who does not, nothing special), that make a more complex health-manual but I am used to that, so for me it not more complex. So I deal with any of these issues if and when they arise. It does not make me feel that I have any kind of special disease. I need water and food to stay alive, and I need to keep moving, and sleep, these take a lot of time too, but they are all not diseases either are they? And I need to eat my medication as well and do some more excercises to keep my lungs clean. So, does that make up a disease? What’s the difference? There is not.

      It does not make me special or other, it does not make me feel different, I does not effect the way I experience life. It only has some practical implications that I deal with, that’s all. What good does it do to call it a disease, to tell anyone about it in that way, to give it an identity and than run the risk of that identity taking you (and others that know you) over? I see it happen in so many patients and families. It is not for me. Once you realise the mechanism of this identification, you can stop it. I never bought it.

      So, to sum up, being open or closed about it, is not the issue. The real issue is: how much do you believe that you have cf? If you don’t believe it, you don’t give life to it and it stays the little thing it really is: just another of life’s happenings that you have no control over what so ever, nor should you think you have or should you try to have. It is all in the game.

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