Back in the pre-internet Stone Age, it was easy to think I was the only person in the world with cystic fibrosis. For a long while the only other person with CF I knew was a girl about my age, 15 or 16 at the time, who had been IV'd up (getting intravenous antibiotics) in the hospital room next to mine.
We'd visited one another and chatted a couple times -- this was also before anyone knew about cross-infection -- and that was it. There was no Facebook, email, or cell phones, no real way to keep in touch. (There were regular phones, obviously, but you didn't just hand out that information to strangers back then.) Plus, the girl and I were both pretty sure the nurses were trying to set us up, a fact that made the whole situation weird and awkward.
All I really remember about her is that she was skinnier than I was somehow, and a fan of Insane Clown Posse. Meeting her was the first time I realized that cystic fibrosis was a real disease, with real consequences, and not simply something wrong with me.
Technically, I had been diagnosed with cystic fibrosis at 3 years old, but I didn't actually know I had CF until I was in sixth grade, when my parents signed me up for a clinical trial for dornase alfa (Pulmozyme®). And I didn't actually understand what any of that meant until my junior year in high school, when I came down with an unshakeable case of bronchitis.
After six months of sick days and constant coughing, my family's physician finally reached out to an actual pulmonologist, a cystic fibrosis specialist. She, in turn, explained the severity of the diagnosis, the ramifications, all the things I didn't know I should have been doing all along. I was treated for my first exacerbation, had my first peripherally inserted central catheter (PICC) line placed, met the Juggalo girl. Those two weeks were a cascade of life-changing revelations.
I promptly ignored all of them and went back to school like nothing had happened.
For a long time, and for any number of reasons, my only coping mechanisms were denial and spite. If I was having a hard time running, it was because track was stupid and the gym teachers were idiots, and definitely not because my lungs weren't working. If I was coughing up gross stuff and having diarrhea, well, that wasn't my fault either. The air in New Jersey was terrible; the pizza I had for lunch was too greasy.
I fought against acknowledging my cystic fibrosis for years, through high school and college and then some, before my declining health finally forced me to accept the truth and fight against the disease the right way this time, with drugs and treatments and common sense. I realized there was no shame in coming to terms with my own limitations and extra needs, and that doing so doesn't mean that those limitations will consume or define me. Taking a break isn't weakness. Knowing what's best for my continued existence isn't a failing.
Of course, as much as I'd like to claim an epiphany or having finally reached enlightenment, the truth is I didn't come to those decisions entirely on my own.
Well into my late 20s, I was still having a hard time committing to doing my meds regularly. I was drinking heavily and shrugging off my friends' smoking instead of yelling at them or leaving. I was spitting up blood as I drove home, coughing myself awake as I tried to fall asleep. I was in the hospital more and more. I knew I was in a bad place, but I couldn't seem to bring myself to do anything about it.
On my clinic's advice, I saw a behavioral therapist, to help me develop better habits, to help me realize I wasn't doing myself any favors. To give me the “Very Special Episode” speech about how real friends really care. Over a couple months, he talked me through the injustices of being dealt a crap hand, personal responsibility, and all of the other things I hadn't yet come to terms with. He showed me how to move from petulant anger and disbelief to acceptance.
That's actually the other thing I remember about the girl from the hospital: She was angry, just like me. And, really, why wouldn't we be? Cystic fibrosis sucks. But there's a difference between being angry at the world and using that anger productively.
You really want to stick it to CF? Own it, and survive.