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You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?
I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".
Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".
You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.
I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.
I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.
So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)
