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Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
I recently posted a question about CFers and being secretive about their disease. I also asked why some consider their numbers (PFT's) to be a private matter. After reading through all of the responses, I figured I would post my thoughts on here concerning this subject. -Awareness is key. I don't shout from the mountain tops that I have CF, but I also don't hide it. The more people who know about CF and it's affects, the better. Imagine if everybody knew what CF was and that you can't catch it? Would children need to be so ashamed or get teased with comments like, "staying away so you can't get it"? Knowledge is power in every circle of life. The more people know, the less ignorant they become. For ME, and I stress ME, I dedicate my life to spreading awareness so that hopefully future generations won't ask the question, "What is CF?". It would make ALL of our lives easier.
-If people "look down on you" for having CF, why in the world would you want them as friends anyway? It's not something that I state with my name when I meet somebody, but I certainly bring it up quickly if I see any type of relationship forming. Often, CFers with larger support systems seem to be healthier. An easy way to bring it up with friends (without actually bringing it up) is to set your digestive enzymes on the table before you and your friends dive into a meal. That will ALWAYS get the conversation going.
-Generally speaking, we only hide "skeletons in our closet" if they are BAD things. CF may be a horrible disease, but it's not a character flaw. People will often react to CF by the way we present it. If I'm very secretive about it, then people will assume that it's some terrible thing that I don't want exposed about myself. CF plays a small role in who I am, but it certainly plays a role. For me, I think it has had a positive effect on who I am and many of my friends and family members have said the same thing. If you spin CF into a positive aspect of your life, friends tend to gain respect for your tenacity and perseverance in facing this disease. You don't become the "sick one" of the group, you become "the warrior".
-A common response I got was that people wanted to be seen for who they were and as an individual yet they didn't want to be seen as "different". To me, this seems like competing answers. Bottom line: I AM different. I have a different hair color than some of my friends, I weigh a different amount than most of my friends, I'm uglier than ALL of my friends, we all don't like the same movies, some of us are smarter than others in the group, and oh yeah, I have CF and they don't. CF does make me different AND it makes me an individual. Many of my friends come to me in hard times cause they've seen me navigate though these different challenges I've had in my life. I wear that as a badge of honor. I'm thankful that CF has molded me into a person that my friends would seek advice from. Would I be that way without CF? I can't say for sure, but I doubt it.
-When it comes to PFT's I think it's VERY important that we share those numbers with each other. If your PFT's are higher than mine, I want to know what you do differently than me. Maybe it's pure luck and you have a superior genetic code when compared to me, but what if it's not? Aren't we all willing to do ANYTHING to improve our quality of life? When I see someone my age that has higher PFT's, I admit, I get a little jealous. First I think, good for them, that's awesome (and I sincerely mean that), but then I think, "I wonder what their CF story is and what they do on a daily basis that is different from me?" I get it that some of us can do EVERYTHING right and still be very sick. Is there anybody out there though that would argue that TRYING to do everything right will MAKE you sick? Of course not. Each of us needs all the help/tips/tricks that we can get our hands on. Personally, I want every CFer to be healthier and happier than me and if I can provide them information on how to get the done, then that's exactly what I will do. We're all part of an exclusive club here that only has 70,000 members world wide. We all play for the same team. Doesn't it make sense that we all share our playbooks?