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Thread: opening up

  1. #1
    Junior Member
    Join Date
    Oct 2018
    Posts
    1

    opening up

    Hi im a new member looking for some opinions on how to get my son to open up about his cf. He is 15 an active football player wrestler and runs track but all he wants is to deny his cf and be a normal teen. he is our only child with cf and he has 3 other siblings in one home. he has known about his cf since he was 3 months old. being a teenager isnt easy and then when we throw cf into the mix it makes things more complicated. he doesnt like to use it or say he even has it. anyone going through this with there child or been through this themselves. he has a very poor attitude about it. he doesnt want to learn anything new or even research into his cf. he does all his meds 100% of the time but just seems embarrassed and i would love to make him more comfortable.

  2. #2
    Super Moderator
    Join Date
    Apr 2006
    Posts
    20,904
    Our child is 15 and for him, CF is just a fact of life. He has a routine --- vest, nebs, enzymes but it doesn't really affect his everyday life. He takes enzymes at lunch, has an occasional missed day of school due to doctor appointments in the City, but otherwise he's a normal teen.
    His friends know he's doing his vest afterschool or in the evening while they're playing online video games.
    He sees other people wcf at great strides and in elementary/middle school there was a student wcf who was a few years younger than him. That child had major health issues and has missed quite a bit of school.

    We ask him every once in awhile if he has any questions, concerns and leave it at that. Our fear as parents when DS was diagnosed was that he'd be the sickly, lonely child -- no friends, always missing school, unable to participate in activities, which isn't the case.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
    Junior Member
    Join Date
    Mar 2017
    Posts
    12
    I am the mom of a son with cf who is now 33, as a teenager he played all sports, and his friends knew he had cf but it wasnt a factor. He did his meds mostly all the time, and when he didnt he felt awful so it wasnt worth missing a treatment. CF is just a part of him, he use to tell people I have CF I am not CF. He would never let it stand in his way, he has kicked CFs ass many times. Make sure your son knows you are there to talk to if needed and I'm sure he will turn to his doctors as he matures. He is a typical teenager he just has CF. Relax and dont stress too much as long as he continues to
    do you his treatments .

  4. #4
    Senior Member
    Join Date
    Sep 2016
    Posts
    174
    I think almost every teenager with CF, as long as they are healthy and their CF doesn't get in the way of living a normal life, don't bring it up or take a real interest in it. I know I didn't. I know I didn't. I ran cross country, swam on summer and winter swim team, played clarinet, and made it to state in track for the 2 mile. I knew I had it, was really good with my treatments, and because I was in such a good routine, I forgot I had it sometimes. So at that point in time for me, I didn't care what was out there and what was going on in the CF world. When I got to college and started working, I didn't wanna tell people I had it and I hid it very well. Eventually my college friends and close co-workers found out and were totally cool about it. The reason why I didn't want to tell anyone is because I was afraid they would judge me based on my CF and not on who I was as a person. The second reason was really, it wasn't their business to know I have CF. It's not something I wanted to parade around. We live in a world where we are judged by what we can't do and not what we can do. So for a teenager, feeling normal and being seen as normal is their main focus. Eventually, as I got older and my lung function took a huge hit, did I actually start researching, started seeing a therapist that helped me accept my CF and all that came with it. I would highly suggest this route and I think most CFer's would agree that having someone to talk to about their CF is beneficial and a huge part of growing older with CF. Getting on this site was something I stumbled upon looking for answers for one of my current challenges. I've only been on here for a couple of years, but knowing that I have a way to connect with other people like me gives me so much comfort. Give it time and don't push him to accept what is his normal, because as long as he's compliant, he's living his normal and has already accepted that. Focus on these great times he has as a teenager.

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