What I Wish People Knew About CF

I am a member of Cystic Fibrosis forum that strives to bring a sense of community, realness and positive thinking to those of us with CF and our beloved love ones. A while back the question of what we wished people without CF know about CF or could understand better was proposed. At first I had a laundry list of points and thoughts but then I withdrew from the question entirely thinking it was too complicated to even begin to answer.

As time has gone on that question keeps coming to mind. It flares up when I think that someone should know what I am talking about and not look at me like I'm the idiot. Which neither of us are, I just think there is so much and too few words. I feel like it will never really be understood by those without CF, but that they'll only be able to related thru compassion, empathy and love.

We all know what its like to experience a cold, many know what its like to have a daily routine of medications, many know what is like to face a doctor who gives you statistics on how long you have to live, many know what is like to walk thru life being imperfect in pain with no cure and many know what its like to face astounding medical bills. But to know what its like to have CF, is like trying to know what its like to be another person all together.

I want to be able to education my readers, friends, family and the entire world. I want to give you something that your brain can rap around. I want to paint a picture without making it look hopeless but even that is a daunting task that I think only a lifetime of educating oneself on CF will accomplish.

But I can try to pin point a few things I and other CF'ers wished people could understand better......

• Minor colds, or illness's could be life threatening and please take me seriously when I ask to be notified that your feeling "under the weather" so that I can bow out.

• That not all CF'ers are the same. CF affects each person differently and manifests itself differently from patient to patient. We are not cookie cutters. We are unique cookies, some of us have 3 chocolate chips while some end up with none.

• Taking care of myself is a full-time job with no pay, no benefits and no prospect at future employment. No joke. But most of us have to really seek employment to pay for our medical bills and fear losing SSI/SSDI if we are gainfully employed. So, really, we have two full-time jobs. 

• Our life expectancy isn't 16 anymore. We have fought hard and we have pushed that number up into the mid to late 30's!!!

• CF is our WHOLE life. We don't get better, we never go into remission and we never get a break. EVER. If we do its because we have died.

• We pass gas and can't help it. Many CF'ers are plagued with having to take enzymes to digest food which can't break down the fats and causes massive stomach pain. We are sorry for this and we know its very unpleasant for all who happen to be around. Sorry a billion times over.

• Wish it was viewed as a "lifestyle" disease instead of a lung disease. Because CF is not a lung disease it's a disease of the cells and it affects far more than just our lungs.

• We struggle tirelessly to gain weight. Many of us have G-tubes to get extra calories. We hate hearing that you would trade being heavy or needing to lose a few pounds for CF. Take my word, you would not.

• Just because I have CF doesn't mean my offspring will have it too.

With all that being said, please join the conversation. What would you like to know about CF. What things have you thought "I wonder why, how, when.........." The above is simply from mine and others with CF's prospective based on what people have said to us, asked us and non-verbally communicated to us.

Just curious about what's floating around in your head!

~Doodlin'