Cystic fibrosis is nasty.
Bacteria makes my breath stink. Malabsorption makes me fart a lot. I cough so much that my face turns red, and blobs of mucus often fly out of my mouth and onto the shirts and/or pants of those standing in my general area.
If I could spontaneously not be an incontinent 22-year-old, I’d give it a whirl. Believe me. The college girls I see on my daily walks to class are tall and strong, and I have a feeling that they don’t pee a little every time they sneeze. They radiate a warm, youthful glow. They are beautiful. I envy them.
When I was in the ninth grade, I had to take Physical Education, aka the most humiliating place ever to be a chronically ill person.
Mornings spent in P.E. class pretty much confirmed that there was a canyon-sized divide between normal teenagers and me (or at least between our physical abilities). I’d often be on my second lap around the track while my classmates, each having effortlessly finished four, whispered and waited in the bleachers. Their bored eyes seared into my sweaty soul. For me, running a mile required two hits of a Ventolin inhaler, prescription-strength deodorant, and double-digit minutes. Everyone else seemed to blink and be done.
I remember when our class had to swim every day for one week. Everyone was stressed about having to go to English or band class with damp hair; and don’t get me wrong, I was stressed about that, too. I brought a blow-dryer to school, not that it worked on the mangy tumbleweed growing on my head. But I had a different reason to dread pool week. You see, it’s kinda my thing to choke, cough, and baby barf any and every time I enter water.
I had accepted my fate and was ready to nearly drown, and thusly humiliate myself, for an A. What I didn’t expect, though, was the shame I’d experience while waiting in line for flippers.
“God, I’m so pale,” the girl in front of me said.
“Hey, at least you’re not as pale as Hannah Buck!” her friend responded.
They giggled and turned around to see me standing right behind them. I crossed my arms over my bare stomach and looked down at my pasty thighs. My tears waited until 3:55 to fall, when I threw myself into my mom’s Chevy Uplander and slammed the door.
Didn’t they understand that I had just gotten out of the hospital? That being on antibiotics made me photosensitive? That it was NOVEMBER in MICHIGAN?!
Of course they didn’t. (Well, except for that last one, I assume. Sorry. Got a bit carried away.)
Good people don’t knowingly make fun of chronic illness, and I wholly believe that bad people don’t exist. Those who have ever commented on my sickly complexion or my distended, pregnant-looking CF belly probably had no idea that cystic fibrosis was affecting — or even could affect — my physical appearance. The truth is, it’s only an invisible illness when you’re not looking very closely.
Being open online about having cystic fibrosis has thickened my skin greatly, but I’m not immune to self-hate. I still cry. I will always remember the girl who said I had large toes and the frat boy who shouted “Ew!” when I nearly hacked up a lung outside his Halloween party.
Though being playfully scrutinized by other people can suck, I ultimately know that being gross isn’t my fault — it’s CF’s. Nastiness is literally ordered by my DNA. As my Twitter bio says, I’m “made of mucus.”
The fact that I’m still stinking up the world with my bathroom activities and blinding beachgoers with my thighs is proof that I’m hanging on and winning my fight. CF has yet to take me, and that’s pretty much the opposite of gross.
So, to those who say, “Ew,” I say this: Get yourself a blindfold and plug your nose, cause I’m not going anywhere.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.