Well guess what? CF does not define me, but it is also me! As my favorite person says, "The things that make me different are the things that make me" - The ever so wise Winnie the Pooh.
Being called a CFer makes me different than everyone else, and I am. I have scars only us with CF have. I experience coughing constantly, nebs, medicine, hospital, bathroom issues (TMI), pain, oxygen, death of friends, transplants of friends, people telling me to get my cough "checked" out, people staring at scars or O2, more medicine than food in the fridge, crying sessions of "why me" and a million other things that no one under the age 25, let alone any age should have to go through.
No, I don't let CF define me. I don't walk up to people saying "Hi, nice to meet you- my name is Katie and I have Cystic Fibrosis". But I won't hide it anymore. I am who I am. Love it or leave it!
I will proudly say I am a "CFer". Honestly, and I may be a little biased on this point, but we are the coolest people ever!! Hahah.
For most of us, since pretty much day 1 or shortly there after, we have been a "CFer" and so much more. But that one component- CF- is present in our everyday life, so yes it is a HUGE part of me. Would I spent like 2 hours a day doing "The Vest" therapy and neb treatments if I didn't have CF? Hell no! I can think of plenty of better ways to spend two hours. Not to mention money. Thank god for insurance but if we didn't have it- I would be in some serious debt. Around July it was over $500,000 in claims. Don't get me wrong, I am on the track to be like a million dollar lady by the end of the year, look out men ;) but I can also think of a lot of better things to do with half a mil then give it to hospitals and docs. Vacation anyone?
I know I can't speak for everyone but I think there are more than a few of us that embrace the fact that we are "CFers".
Thanks to Ian Pettigrew- he tracked down around 77 of us "Cfers" that were proud of what we go through and our scars and has started a campaign called The Salty Girls
http://www.ianpettigrew.com/salty-girls.html
Here is a little sneak preview:
All of us decided to brave societies image on what women should look like and what defines beauty. I have a scar in the middle of my stomach. It cuts me in half and on hot days, it sweats. Because of the CF, it is extra salty due to chloride not being able to properly go through its channel. HAHA to be honest, Ive lived with CF my whole life, and I still don't completely understand what caused it. Maybe Google can help? All I know is that all of us living with CF should not be afraid to say we are different and we may be given a "generic" tittle- a "CFer" but so what?
I have a feeling that people who meet me, don't remember as the girl who has CF. Maybe, it helps place me? But I think I have enough other unique qualities that make people remember me first. And if they remember me because I am the girl with Cystic Fibrosis - so be it? Don't tell me you haven't remembered someone or someones mother because they had breast cancer? Cancer didn't define who they were, they are a person first and foremost, but that ugly disease reared its head in their body and maybe changed them for the better because of it. I personally know a few women who are proud of the fact they had breast cancer and are now doing so well. Good for you!! Embrace the fact that you were given such a (excuse my language) shitty end of the stick and a challenge, and thanks to modern medicine you accepted it and won. Nothing to be ashamed of for having cancer. Nothing to be ashamed of for having CF.
So to the girl who said she does not like to be called a "CFer", I hope you change your opinion about it. It's something to be proud of. You have been given an enormous task in life, fighting Cystic Fibrosis. Why hid and pretend it doesn't exist. It does. And every birthday, major milestone, or bucket list item you accomplish or pass is winning. I know I want to win, do you??
