The other day I got a FB message from a fellow CFer, and she brought up how CF needs to be more public for children, that she hid her CF from her peers. Unfortunately so did I, and who knows how many others did the same…

I had so many stories to cover my butt. I have asthma is a big one I used, just because everyone knows about asthma and would ask no questions or give me that look. My pills I would take in secret or sometimes not at all, and oh how I would regret that the next day…

Once when I was in public school, someone saw me taking my pills, and told the teacher that I was popping speed…Yes I am a hyper person but that is just silly…After this event I told the teachers but no one else.  I kept it like a shameful dirty secret.

The people I did choose to tell, well they didn’t know enough about my cf so I could manipulate my disease to make it much less severe than it was. At one point when I was a naive teenager going through the whole I am indestructible stage, I tried smoking.  My friends that knew would ask if I should do that, and I would respond by saying my CF only affects my stomach. They didn’t know enough to doubt my lies… (I paid for those lies with a two week stay in the hospital) The other thing I would do was make silly things up. I told a few people that my vit e was hash oil to increase my appetite.  Anything to make cf sound cool or like a very minor issue.

I got ill many times not doing my routines and taking my meds like I should have, and I wish I could have been open stood up and said, yeah I have CF. I chose to stand out in other ways, to hide the cf part of me. I dressed in unusual ways; listen to unusual music, things to make people know me for anything but, oh there is that girl with cf… I grow everyday to overcome this…even now while I am having a mask I make sure I am not in front of a window in case someone were to see me, and not because of my cf this time but what if they think I am smoking a bong or something. I am trying to build awareness so that young cfers do not need to feel this way anymore. Wear your cf on your sleeve you didn’t ask for this, this is just how we were made…


One thought on “QUICK HIDE……..

  1. Loved this post! I completely relate to just about all of your stories about “hiding” or minimizing CF growing up. I decided early on that CF would not be something that defined me in any way, and that manifested itself in both positive and negative ways. Like you, I often used(/still use, if we’re honest) the excuse that I had asthma, because people knew what it was and that it wasn’t THAT big of a deal. I didn’t want to be the “sick girl.” Enzymes were always taken discreetly, if at all, and even my close friends who knew I had CF didn’t really know much about it, and I certainly never talked about it. Heck, I even had boyfriends in and after college that never really knew I had CF, only “lots of breathing issues,” haha. In some ways I think this mindset made me independent and resilient, but at the same time it also resulted in some really stupid health decisions. I think raising awareness is key – in learning about the details of the disease, all the progress that’s been made in fighting it, and the fact there are many CF patients who grow up to live relatively normal, happy lives, the non-CF world will not immediately respond with either confusion or pity when they learn someone has CF, which would result in kids with CF feeling more confident in sharing their experience with others and not having to “hide” or disregard their treatments.

    Kudos to all your efforts to raise CF awareness!!

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