But at Least I Still Looked Good...

Recently, my sister was reading an article in a magazine about writing your own "7-word biography." Without batting an eye, I had an answer for her:

"But at least I still looked good."

I swear, I'm going to request that be carved into my tombstone one day. It's become a running joke in my family. If I had a dollar for every time someone looked at me and said, "but you look great," I'd be rich!

That is the problem with trying to explain CF to people. It is an invisible illness. I can remember eating in Taco Bell during 10th grade lunch and having "old" people give me grief about what they perceived must be my "smoker's hack." I've had people sitting in front of or next to me in the movie theater get up and move (that usually makes me cough louder and harder and aim it at them because I'm a sick twist like that). I've even had people yell at me in parking lots if I happen to use my handicap placard for parking (I guess if I don't exit my vehicle wearing braces or with the use of a wheel chair lift, I must be faking it and abusing the system, right?)

It's a commonality that people tend to fear what they don't understand. But it's even more common for people to disregard what they cannot see. Call it the "ostrich syndrome" or call it ignorance. Either way, it makes it difficult for a person with CF--especially for someone with a mild to medium case.

Typically, people react surprised and confused when they learn I have CF; mostly it's due to the fact that they've never even heard of it. But when I explain what CF means, they look at me bewildered and say, as though to comfort me, "but you look great."

Like most kids living with a chronic illness, somewhere around age 10 I learned how to work the system. C'mon, admit it...you know what I'm talking about. You learn when and how to play your trump-card. Some days you need to look a little sicker than you feel to avoid school or work or whatever, and other days you need to look better than you feel so as not to miss out on something else. I'm an expert in this department.

My mom got to witness my most recent experiment with the looking good phenomenon. I was sick as a dog when I was hospitalized last fall. I was admitted on a Monday, but knew my best friend from high school was flying in on Friday for a holiday weekend. What to do, what to do? Knowing full well that I would leave with my PICC and handle my own meds at home, I needed to guarantee an out. I spent Monday and Tuesday completely pale and sick and dirty and stinky. Wednesday, I showered and started the pretty process. Thursday added the tiniest bit of blush on my cheeks after that shower. And come Friday morning added the miracle that is black eyeliner and mascara. I told my mom to keep track of the reactions. No lie, within 30 minutes I had been told "you look great" by 2 nurses, a nurse's aid, the lady from dietary that took away my breakfast tray, and finally the doctor. Short story long, I was at the airport to pick up my friend and her family.

It baffles me, really, the idea of how having CF and looking good surprises people. There's this preconceived notion that in order for me to be suffering or fighting for each breath, I should weigh 98lbs and have tubes and tanks attached to me.

Well, I'm here to tell ya, that's a bunch of crap.

Sure, there are going to be days (like today) where I couldn't be bothered to take a shower, let alone spruce myself up. But sick or not, if styling your hair, or putting on a little makeup, or wearing cool outfit makes you feel good about yourself, then more power to you. It all goes back to the old saying "don't judge a book by its cover." People shouldn't judge others based on their appearance, or by how they cough!

So next time you see someone in the handicap space that doesn't outwardly appear to have any disability, don't assume the worst. They could have CF, or cancer, or lupus, or heart disease, diabetes, etc. Just because someone looks good, doesn't always mean they feel good. Again, quit with the assumptions and go ahead and ask how we are doing. Looks can be deceiving and sometimes we may need that opening to tell a person what's really going on in our bodies. And other times, we really feel as good as we look and would appreciate your asking why so we can share the joy.

For young or old, in sickness and in health, when living your life...look good doing it!