CF Awareness Month--How I See It

I recently read a blog post from another girl with CF, as she brought up this issue on her blog "I have CF, so what?". I decided to talk about it as well. Since this month is CF awareness month, there may be a lot more advertisements seen on webpages and in the media to draw in more attention. However, it is important to keep in mind that not all advertisements are correct. It is good to keep in mind that any organization will try their hardest to grab attention through messages that are moving, motivating, or in which ever way they can to pull people's heart strings. Yes, many messages can be correct in some ways, and inspiring messages can lift us up. However, I have heard of this"straw" analogy displayed through this advertisement before. I was confused when I saw this, because having Cystic Fibrosis is not this way. I am going to be upfront and blunt: this flyer is not true for most patients. I feel for those who are on their death bed waiting for a lung transplant, but how is it fair to say that "people with Cystic Fibrosis all feel as if they are breathing through a straw?"

I have a deep respect for the CF foundation for all the work they do, and I support their efforts to find a cure. (I am even trying to fundraise for Great Strides once again this year.) But why put up advertisements that falsely portray many of us patients? When I think of all the CF patients out there, I don't think of them being weak or sad about their lives. As I have read CF blogs, heard different viewpoints and the accomplishments that they have done,they are some of the strongest people that I look up to--not because they are "dying." They are living, enjoying each day. Many enjoy playing sports and running, and sometimes even join college teams or run marathons. Many graduate with Masters or PhD degrees. They grow and raise families, while loving and teaching their children while being incredible examples and leaders. Every CF patient is unique and often has incredible experiences and chances set before them. As many of us have learned responsiblity and hard work, we don't give up. We are fighting for our lives, but we feel free as we know how good consequences can follow each action we take. We do treatments, take meds, have our sick days, our Pulmonary Function tests may bob up and down every now and then, we face health roller coasters or find ourselves in the hospital to recover. Many of us have surgery and picc line scars to remind us that we conquered another fight. However, these experiences do not define our lives. They remind us to live each day fully and that everyone goes through hard times. We may not always have, as I call them, our Pollyanna Days where we have to be optimistic about everything, but these messages people try to bring across about CF are not always correct. Instead of that ugly black background with a stick-like straw to portray our airways, there needs to be something to show hope and fulfillment. Brighter colors, smiles...I don't care.

Along with this advertisement, I have seen photographs that people may call "beautiful."

 I understand that this photographer was trying to bring an inspiring message. I appreciate his attempts, but I was extremely disturbed instead of feeling moved by looking at them.

Once again, I feel for the struggles each patient faces. I feel for the families of those who had CF patients pass on. I love the CF Foundation and applaud them for everything they do. It is important to bring up awareness for Cystic Fibrosis , but keep in mind it is not so morbid and depressing. Many false advertisements and messages given cause people to shrink back from CF out of fear or uncertainty of how to handle the situation, or look down at the patients as "Oh, you poor little thing!" *cough* 2 HUGE pet peeves of mine *cough* Instead, remember how CF patients are often what you may call "normal." We have our passions. We may love to party hard or feel reserved. We have talents and gifts. Each patient is their own individual character, and for many of us, CF does not stop us. There is no need to have donors feel so much pity for us. It's time to be aware of not so much of the morbid things CF can bring, but remember the successes the CF foundation has brought with technology, and most importantly the strengths of the heros who love their lives.