Because you can't always “see” cystic fibrosis and only 70,000 people live with it worldwide, there's a lot of unfamiliarity surrounding the disease. My rattling cough has prompted the, always hilarious, “lay off the smokes” jokes from strangers for years. A passenger once mouthed “ew” to her travel companion as I learned that there is no discreet way to deposit phlegm into a tissue on a crowded bus. Another time, an airline employee sarcastically asked if he could fetch me a wheelchair when I boarded the airplane early with my medical equipment.
Worse than the casual ignorance of strangers though, is the doubt from those who know I have CF. Some people just do not believe that I am sick. But these skeptics aren't friends or family -- I'm lucky to say that I've got one powerful support base there. No, I'm talking about those who've maybe just learned of my CF and insist that a gluten-free diet will eliminate the need for all those pills I'm taking. Or, they feel obliged to tell me about someone they knew in college whose girlfriend had CF, or maybe it was MS, but the point is that they're pretty sure she died, so at least I'm not as sick as her.
This doubt and unsolicited advice from others, though good for honing my side-eye, stopped being funny and slowly turned into self-doubt. And once I doubted myself and the gravity of my illness, I began internalizing a whole lot of guilt.
Maybe I shouldn't call out sick today.
Maybe I should just go to the birthday party.
Maybe I'm just being a baby.
Guilt doesn't only flare up on the bad days; it spills over into the good ones, too. People often think in binaries; you're either sick or you're not. But with this disease, you're sick and you're not. Despite CF's complications, on the good days I'm just trying to live as “normally” as I can. This means walks with my dog, happy hours, vacations, work, exercise and dating. As long as I'm feeling up to it, I live pretty much like everyone else does. But, while I don't like to admit it, guilt sometimes holds me back from doing the things that I want to do. It can feel like I'm expected to be “sicker” or risk skepticism.
As I write this, my lung functions are the highest they've been since high school. For the first time in a long time, I can take deep breaths without coughing. I can run without wheezing. I haven't been hospitalized in seven years, and I haven't needed IV antibiotics in six. And two months ago, I cried into my phone when my specialty pharmacy told me the prior authorization for my Orkambi prescription was approved.
All of this good news should be just that: good news. Maybe CF won't get the last word after all. But before I can celebrate my newfound health, my old friend guilt trips me up again. And this time, it's not comments from strangers -- it's from the CF community.
The online CF community is strong and vocal. And because of this, it's proven to be an invaluable resource to me and countless others. But at times, it's also been discouraging. I sometimes notice a practice of one-upsmanship -- a contest of who's got it worse. I once blogged about how isolating having cystic fibrosis can be and an older CFer commented that at least my generation had social media to find one another. When the FDA approved Orkambi in July, my excitement was momentarily deflated when I read comments made by those in the community who felt slighted -- the drug only works for double F508del mutation patients, so why celebrate?
I've grown accustomed to negative strangers, but my own community? Maybe I need to toughen up, but I was bummed to see this lapse in camaraderie.
I'm sure it was isolating to grow up with a chronic illness before online communities, and I can also imagine it's frustrating to feel like your mutation is being left behind. But I can't take too much more judgment about my health. There's already enough anxiety and fear tied to this illness.
So I'm asking for more support from the CF community. Not just for me, but for each other. Because at the end of the day, we've all got the same invisible, orphan disease and we're all carrying the weight, and sometimes guilt, that comes with it. If we can't turn to each other, then we're truly alone in this. And that's something I'm not willing to internalize.