Tuesday, April 24, 2012

True CF Awareness

I was sitting down to write my own post, and just before I clicked on the little pencil to write something, another post caught my eye in my blog roll. It happens to be one of my favorite Life Blogs written by Lauren, a kick butt cyster who I have never heard offer up an excuse. If some of you mommas out there are looking for a college-aged girl to motivate your daughter, this would be the girl to do it. She's funny, smart, athletic and just an all-around great gal! She has a "take the bull by the horns" attitude that I love, and I find myself agreeing with many of her thoughts. What's nice, is she puts her thoughts out there much more eloquently than I and I'm sure offends much less people than I do :)

Please take the time to read this post, you'll be glad you did. When you're done, visit Lauren and read all of her other great stuff at I Have CF...So What?!?!

This image has been traveling around Facebook today and it sort of took me back a little bit. This blog is not meant to offend anyone, it is just my thoughts. Though I love the CF Foundation, and though I understand that it's trying to tug at people's heartstrings in order to get them to donate... I couldn't help but think that for me, and for many CFers I know... this isn't the truth. Sure, there are many many CFers who feel like they are breathing through a straw every day, who are on oxygen, and who are awaiting a lung transplant. However, there are also many CFers who are breathing easy with CF and who haven't reached a point where it takes their breath. It is unfair to portray all people with CF as breathing through a straw, because the fact is, it is possible to breathe with CF. Sure, some days I've experienced what it feels like to not be able to breathe, to cough until I'm red in the face, etc. However, if the public thinks that this is what CF is like every day, they will be strongly mistaken. There can be healthy days. No wonder why so many parents are so confused and afraid when their child is diagnosed, because sadly, there are ads like these that make it seem that this is the reality of all CFers at all ages and at all stages of their lives. 
Every time I tell someone (who has some idea about what the illness is) that I have CF I get a familiar response. I can see the look on their face, trying to figure out how I, someone who looks relatively healthy except for the cough, has this horrible disease, like maybe I'm lying. I sometimes feel like I should to show them my PICC line scars, show them the insides of my infected lungs, take them to the doctor with me to prove its true, because most people don't understand the complexity of CF. I've had people tell me that they had friends who have died from the disease, friends who are always in the hospital, and that they thought that it was an early killer. I'm not saying that any of these instances are false or rare. CF can kill you, it can make you extremely sick.... but you can also live with CF. Because of the way CF is portrayed in order to get people to donate, some people are lead in the wrong direction. We don't see the healthy people in this ad. Why doesn't it say... "Because of all of the donations that lead to the research and new drugs the CFF has helped to bring to fruition, some people with CF DON'T breathe through a straw. Thank you." 
I also don't like that this ad tries to bring pity to the CF population. It's black background and choppy lines connote darkness. "You can stop when you've had enough. But people with cystic fibrosis can't. It's how they live every day..." What do you think when you read that line? "Oh my goooooodnesss, their lives are so horrible and difficult." And yeah... sometimes it is. But do we really need people to feel bad for us because of it? If there is anything I hate it is pity. Don't see me as someone suffering, see me as strong for getting through it with a smile on my face. Yes, I live with CF every day, and yes I am frustrated that I can't make it go away.... but don't cry for me, because I'm not crying for me. I'm doing what I can to survive, and I'm learning so much in the mean time from my hardships. 
It is important to recognize the complexity of CF.  That while there are people who are struggling to survive, who's lives are taken by CF... there are also those people who live with the illness, who's days are numbered but who have both sick days AND healthy days. The CF Foundation has created so much opportunity for people with CF, and they continue to do so. However don't be fooled by certain marketing techniques. This ad is good in that it tries to get people to understand what its like to live with CF at its worst stages... showing that there needs to be medication out there to prevent CFers from getting to that point. But at the same time, it is time that awareness comes to the forefront. Not just awareness about the bad parts of CF, but awareness of the great developments have been made, the healthy lives that have been created, and the true nature of the complexity of this chronic illness. So that new parents are no longer afraid that there child will be breathing through a straw their whole lives, so that someone that is new to CF might not see me as lying on my death bed, so that we can take even larger steps toward a cure without having to evoke pity in our donators.

Thank you so much for that post Lauren. I know that myself, and many other in the CF community, feel the exact same way.