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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?
16 people had something to say...:
GREAT post -- thanks for it. I am quite open about Ricky's spirometry numbers (even post the scanned sheet in my blog sometmies) and his other health stuff. I figure it will be helpful to get awareness out there and also to help out other parents who are struggling with understanding "what it all means".
You are right... If people are going to look down on a CFer, why would we want them as friends anyway? The people who are Ricky's and my friends are people who accept him for what he is and learn from him and appreciate him.
Again... Thanks for this post!
My son is 2 and diagnosed through the newborn screening test. I hope his generation does not have to think twice about being open about CF. Do you think different age groups deal with it differently? Did the 80's after school special "Alex: Life of a Child" influence your generation and how people react? I am learning so much from you blog so please keep writing!
April-
To be honest with you, I've never seen that TV special.
Different age groups definitely deal with it differently. As we get older we "accept" it more and start to not care what people think. Now, for me, it's never been an issue. I've always been open about it, but I know a lot of my friends who weren't. I would actually make my schoolmates jealous that they couldn't take pills before THEY ate. Haha.
One of my personal campaigns is to get people out of that "CF in the 80's" mentality. Bottom line: when I was born, 4% of CFers still died within there first year. Today, I don't even think it registers as a percent. The disease has changed over the last 20 years and I don't see any reason to have nothing but hope. If you are born TODAY with CF your life expectancy is above 40, mine was 19. Imagine how much it will change in the next 5 to 10 years. Not to mention that the drugs that activate the cell are now in Phase 3 and Phase 2 studies. I am convinced that if I can stay "healthy" for the next 10 years, I have just as good of a chance as the rest of the population to live until I'm 90! That's how good the drugs are getting. The KEY is to take care of yourself NOW! BE YOUR OWN CURE!
Thanks for the questions. Keep em coming!
Ronnie
Thank you for asking about Nathan. He has not thrown up in almost a week! I am guessing the doctor was right about the bacteria.
...and AWESOME post. Since I am very new at this, I appreciate the views of more experienced CFers and CFparents
Awesome and very well said!!! I use to not be open about only certain people new but towards my latter part of high school. I started to have to go into the joint more and so I started being open about it. And now well really I am a open book anything goes now! :) so much better to be that way I think. Its funny how Fev1's seem to be so personal to some. I love the whole play book scenario... It is so true!
You seem like such a great guy! Excellent post...I think it applies to a lot more than just those with CF.
And I doubt you're uglier than all your friends...I've seen you in pics with some of them...I beg to differ.
Awesome post Ronnie! I guess I was secretive about my CF in high school and college somewhat, because I just wanted to be like everyone else. After my first hospitalization at 23 though, I didn't hide it anymore. Now that I've had 2 transplants, it would be pretty much impossible. LOL. I applaud you for not hiding it, and for getting the awareness out there!!
Really great. You totally summed out how I feel about CF...on the good days anyway. My health is getting worse quicker and earlier than I'd like and I'm constantly battling it. It sucks but it also has made me who I am..who knows what kind of person I would have turned out to be if I didn't have CF. Sure there are days where I wish I didn't have it but I'm weirdly thankful that I do. I have a deep appreciate my life and the people in it. I'm also very open about my disease, more so now than when I was younger. Thanks for your post. I really enjoyed it :)
Ronnie -
Everyone has there own comfort level with CF. I've spoke with several people who were in college before they ever spoke about their life with CF. If no one knows then you are "normal." I hate that word...
And then there are people like you and Emily Schaller at www.letsrockcf.org, who have openly spoken and posted blogs/websites about that focuses a lot about your individual CF journeys. And thank goodness for both of you because your efforts people are getting positive and correct information about CF in the vast and and sometimes inaccurate resource that is the internet. You are both great people and I refer others to your posts all the time. Keep doing what you do because you are excellent at it.
I would say I am in between those two viewpoints. I do not hide my CF. I educate those around me and those who read my blog because, as you always say, awareness is important. I am not afraid to answer any question people ask me.
At the same time, I make a point to write about and focus on other things outside the topic of CF, not because I don't want to spread awareness, but because I have other things to share as well (just as you do and have done i.e. fun times you have with Mandi) that have nothing to do with this disease. Does that make sense, bro?
In response to the sharing PFT numbers topic...What we do to to keep ourselves healthy is much more important than the numbers. PFT numbers and your overall health are individualized and have a lot to do with severity of your genetic code. My sister and I must have had major differences in our overall codes because she struggled from birth with her lungs no matter what exercise she did, while I was on the wrestling team through high school and didn't have major lung issues until much later in life. I know for a fact that my PFT numbers would frustrate my sister and make her question why things were so hard for her. From that point on, I only shared whether they went up or down and how I did it. That, as you said in your post, is the important element.
You Rock Beyond All Reason Buddy,
Josh from www.welcometojoshland.blogspot.com
That makes total sense Josh. I commend you on the job that you do in spreading awareness. I'm proud to call you my fibro!
Ronnie
As usual a great read as I get ready to wind down for the evening. I so wish I had you talent for saying what's relevant, true and most of from the heart.
Love it....well stated...thank for being a positive light in the CF Commuity
This is one of my favorite posts you've done. I'm going to share it on my facebook as well. Thank you so much for writing and for being so open as I believe it makes ALL the difference.
Hi Ronnie,
I am open about having CF, it never really bothered me in the aspect of how people think about it. So you want to know PFT numbers, huh? OK, currently mine are 84%. When I had my son the hung around in the 40's for about a year. It has been a long road to get them up and keep them there, (and I don't run), that is a secret.
Lisa
This is such an interesting post! I have always been very open about having CF - since I take handfuls of enzymes with every meal and cough regularly, I'd rather people know what was going on than make up their own weird theories. I love when people ask me questions about CF, because I'd rather they ask me and hear MY answers than go do their own research and potentially come back with some faulty information. I'm also very open about CF on my blog, and all the physical and emotional ramifications.
However - I typically don't share my PFT numbers widely online. I am blessed with relatively high lung function; some of it is certainly from hard work (and I attribute a good bit of it to the fact that I never had the classic "rebellious phase") but much of it is simply how my life has played out. That said, because of CF, I have developed many other debilitating health problems, and so in many ways my life is more affected than some people with lower lung function. (I can't work, I was not able to finish college, etc. My life is wonderful and I'm a very happy person, but it's definitely different from "the norm"!) Because of that, it can get frustrating to me if somebody sees that my PFTs are in the 80s and automatically assumes that that means I don't have many of my own daily challenges to deal with.
Plus, as Josh so eloquently said, I think that it really can be hard when somebody is struggling with numbers that are dropping no matter what they do, to hear about somebody whose numbers are staying high with little or no effort. So I try to be sensitive about that. I think that CF has its challenges no matter what your PFTs are, and so usually when I am connecting with other CFers I try to leave the numbers out of the equation - I guess you might say I feel like it allows for a fuller degree of empathy.
I remember growing up with Michelle, and getting so outraged because people always treated her like she was half my age, because of her size. People didn't understand what CF was, and quite frankly, I doubt I would have if I wasn't closely affected--Chelle is a sister to me. I wish that there had been someone to share such positive and optimism, as well as important facts, but in our days of growing up, there was negative outlooks and pessimism. Anything you can share to help keep so many in your positive outlook will help the CF community, never hurt it.
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