Here’s What It Feels Like to Have Cystic Fibrosis
There’s a rattle in my chest when I inhale. I sweat and dig my nails into my palm. I feel it, microseconds of dread and fear as the rattling gives way to something like the plugging and unplugging of suction cups in my airways. That quickly escalates into a “cough attack.” I cough, cough, cough, cough — 20 times in rapid-fire.
I see black and stars, sweat blasts from my forehead and pits, knives pierce my chest nerves, my legs kick out like I’m hanging from a noose. In a dimension beyond the screeching and buzzing filling my ears, people ask if I’m OK. Eventually, I collapse. I focus only on breathing, eyes half-closed, flickering. I emerge from my suffocation with a wet crotch; blurred and tear-filled eyes; clay-like mucus and vomit covering my hands, forearms, shirt; and a burning blush upon my cheeks. People stare in horror, wide-eyed and mouths agape.
It was a bit of a shocker to friends when my invisible disease finally became visible. Upon seeing me leashed to wheeled oxygen tanks, some remarked they “didn’t realize it was that bad.” I hadn’t desired that realization. It’s hard to make friends when people think the package deal includes a funeral — that much was evident by the number of people who later confessed they’d unfriended me on social media to avoid seeing their friend die. Out of sight, out of mind.
Now, I’m relatively safe in my post-transplant life (or so I want you to think!) and a little more shameless, so let me give you an idea of what was never invisible to me.
Few friends knew I started every morning with my head lingering over a pond of vomit in my toilet bowl, nor that my morning began at about 2 a.m. Then, I’d toss and turn in bed for a few hours. “Morning workout” complete, another vomit sesh at 6. Friends wondered why I never needed coffee, and well … I didn’t even need an alarm clock in those days. Vomiting was clockwork, about six times each day, and the taste forever coated the roof of my mouth. The taste of vomit and salt because three times per day, ideally, I’d spend an hour inhaling nasty meds and salt vapors, plus get a good shaking from my Vest.
Friends would see me in class and say I looked good, not knowing I’d filled an entire mug with (no, still no coffee) clay-like mucus. They often made fun of how my body would shudder, almost like I was freezing. They didn’t know I was swallowing gooey globs of mucus. Classmates and teachers would ask why I was being quiet, not realizing I was focusing on relaxing chest muscles to avoid a cough attack or that I simply didn’t have enough air to speak loud enough for them to hear me in noisy spaces.
Sometimes I’d be entirely absent from class. (Except when that professor never let me ditch class for medical reasons, even when I was struck deaf by antibiotics and doctors ordered me to rest.) Multiple days each month I spent two hours on the bus to doctor’s appointments that required waiting room times of four or more hours — all for 15 minutes of face time with a doctor — then four hours on the bus home at rush hour. There were days I left my college campus at 6 a.m. and returned at 7 p.m.
Sometimes I didn’t get home at 7 p.m. Instead, I’d be hospitalized for weeks for “rest,” which means nurses and doctors stabbed and sliced me lots and barged into my room at any moment, even in the middle of the night. Sometimes I’d lose my mind. I didn’t realize the value of privacy until I was a caged lab rat. I’d stare at toxic IV antibiotic drips, wondering how many torturous side effects those little bags shot into my heart, knowing that they bought me time today but shaved off time tomorrow. I’d spend nights alone and afraid, dreading the next day’s torture and thinking too much about my countless CF friends who’ve died … or my own death.
Ah, death, the reaper I first thought hard about the day I opened my biology textbook during a class on genetics and saw my expected expiration date printed. The day my friends turned around and stared at my burning face. Or maybe it was when I was very young and held a kitchen knife against my little ribs, wondering if “black nothing” — the deep sleep — was worse or better than CF’s torture.
All this was on my mind, yet I also had to endure the words of those I trusted mocking my brain fog and fatigue. They also loved joking about my skinniness and wishing they, too, could eat “whatever I want like Brad does,” without considering the awfulness of malnourishment. Or needing to eat double the calories when everything tastes like cardboard. Or vomit rising in the throat.
I hope friends never feel what it’s like to suffocate 24/7, to be told by doctors there are no treatment options left, to lose hearing from medication, to suffer from trauma and psychosis, to be dependent on fentanyl, to be subject to ableism, to know they’ll never have kids the natural way, to be so starved they can’t get out of bed, to know parents fear they’ll die after their kid. But I hope my friends try to understand.
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.