5 Things I Wish Someone Told Me About Having Cystic Fibrosis

May is Cystic Fibrosis Awareness month, which always makes me feel like I should write a stirring, insightful piece about the challenges of CF. In lieu of that, please accept these 5 things I wish someone would have told me about dealing with CF.

Bonus Entry: If you find the orange enzyme, you get to tour the factory!

1.“They” Are Not You.

I think every flowery human interest piece about an inspiring individual with Cystic Fibrosis should have a little break out box showing what that individual does for a living and how they’re getting their insurance. Every story about anyone overcoming the challenges of CF without this information is useless. (for the record, I’m a data analyst and have insurance through my employer).

At the very least, there should be an acknowledgment of circumstance. Because when I was growing up, I read a lot of human interest stories about CF, but I’ll be damned if I read many stories about humans with CF. It made me feel like I might be the only actual person with CF.

And then I saw Sick. Sick: The Life and Death of Bob Flanagan, Supermasochist is a documentary about–you guessed it!–Bob Flanagan, Supermasochist. He also happened to have CF. And though we have very different ideas about how close sharp objects should be to the groin area, Sick was the first time I saw a portrait of a person with CF that put CF in the background and put the rest of Bob’s life up front (in graphic detail!). It’s difficult to watch, both for the infamous nail through the penis scene and for the fact that you watch CF kill him, but it meant a lot to a weirdo like myself to see a different kind of weirdo deal with the same stuff I was dealing with.

And thus is the danger of the human interest piece. I don’t want to call anyone out here, but I cringe every time I read a story where someone says something like “I’m almost glad I got CF. I’m not going to let it win!”. I understand the intent and I understand that some people may find stories like that very useful. I’m not one of them. Like the food at California Pizza Kitchen, not breathing has an inherent shittiness to it that won’t become any more palatable just because you try to convince yourself it’s not so bad. And no matter how much someone tells you that “other people have it much worse”, your lungs are still filled with sludge and your stomach is still filled with a chewy, pizza-adjacent contraption that for some fucking reason had mayonnaise on it. It’s almost like…

2. Other People Having it Worse Than You Doesn’t Make It Better For Anyone

Yes, other people have it much worse than you. If you’re reading this, no one should have to tell you that. You are one Bing search away from finding someone who’s worse off than you (I didn’t get paid for that Bing reference, but I’m hoping if I keep making them the checks will follow). But just because some people have to eat at Hometown Buffet doesn’t mean CPK’s Wild Mushroom Pizza isn’t just the leftover bits of other meals scrapped onto a pizza crust.

Right now I’m very lucky to have a flexible job that pays decently and has good insurance, but it was something I had to ease into. I took a lot of baby steps and had a lot of false starts. And even now that I have some momentum behind me, this train could stop at anytime. One day someone offers me some leftover Jamaican Jerk Chicken “Pizza” and the next day–BOOM!–prolapsed anus leads to hospital visit leads to lung infection leads to selling that bust of Frankenstein’s Monster I bought back when I thought I’d die before the intro APR on my credit card expired.

I did not work 40 hours a week until I was 25, when I got an overnight shift at a call center, a job that mostly required me to make sure no one stole any phones before the morning shift came in. But even on a night when no one called, it was never easy to do my treatments, get dressed, drive to work, hold my shit together for 8 hours, then make it home in one piece. Especially when I forgot my pills and didn’t get to eat lunch that day.

I’m not telling you this for sympathy. I’m telling you this because it feels nice to type all that out. Now that I’m older, I feel like people–family members, mostly–“believe” me more. But when I was young, each complaint about the difficulties of working 15 hours a week at a Laser Tag arena had an echo of “other people have it much worse.”

If you make a medical complaint–say for instance “all this blood I’m coughing up makes it really hard to hold down a job”–and someone says “other people have it much worse than you”, it means they want you to shut up, but they can’t say the secret word(s) because everyone would scream at them. Instead, they package up their reasons–guilt, boredom, time constraints, misguided attempts to build character–and hide them behind a neat little phrase they hope is going to shut your mouth long enough for them to sneak away.

It’s technically possible to go the entirety of one’s life without complaining, though I wouldn’t recommend that. But even if you decide to take a vow of silence regarding medical complaints, you must never internalize the idea of people having it worse than you as an excuse for inaction on your part.

I lost my insurance when I was 22 and navigating the state system made me feel like a real piece of shit who was destined to be a permanent drain on society. Every “other people have it much worse than you” came flooding back and made me feel like I was going door to door and slapping food out of the mouths of poor children just so I could breathe my stupid drugs and keep the neighbors up with acoustic renditions of “Number of the Beast.” I felt like someone was going to figure out I was the type of lazy, disgusting heathen that wasn’t worth saving. If only I could suck it up like everyone else. Which brings me to…

3. Don’t Pretend Nothing Is Wrong

I decided to pull myself up by my bootstraps and get myself an honest factory job. I won’t say exactly where I worked, but it rhymed with “Frito-Lay.” This was a colossally bad idea for a couple of reasons, most of which I got into in this piece. Long story short, I stressed my body so bad I didn’t shit for three days. When I finally did move it, there was blood and screaming.

The problem was I decided to tell my body to go fuck itself, which is an idea that’s often sold to sick kids in much more polite terms. And that’s fine. Cystic Fibrosis–or any other chronic illness–shouldn’t limit your ability to do things. But in the real world, it does. So sometimes you have to come at things from another angle.

Here’s a real simple example. Do you like nachos? I like nachos. But if you’d like to have nachos together, I’m going to need six pills before I eat. Also, how much nachos are you going to eat? I’m taking insulin on a 1 unit to 10 carb ratio, so I need to know that exact amount of nachos I’m putting down. Plus, can you wait an hour? I last took my insulin at 3 pm and I can only reload every four hours.

See? I can eat nachos. I just need to adjust the way I do it. Here’s how it would go if I just ate nachos like nothing was wrong:

*bite* *shit* *bite* *bite* *shit*

Speaking of shit…

4. Some Shit is Out of Your Control

Even eating nachos is more complicated that I made it seem. Sometimes–for what seems like no good reason–the carbs from the nachos hit faster than normal and then disappear out of nowhere, leaving me with cold sweats and a super low blood sugar. I can eat the same meal at the same time with the same circumstances on different days and get wildly different results. Because some shit is just out of my control.

This is the same reason that you can train, say your prayers, and eat your vitamins and still feel like someone did a leg drop on your lungs. You don’t always get to decide how you feel. You do get to decide how you react to it though, so feel free to react with a nap. Or maybe you can’t sleep because you’re coughing too much. React with a glass of water and a book or something. Cough so hard that you got blood on your book and shit in your pants? Well, clean it up! Some people have it much worse you know. Because really…

5. No One Cares About How You Feel

That sub-heading is total sensationalism, but it’s only because I really need you to pay attention to this: You are the only one who knows how you feel. And I know I just said no one cares about how you feel, but that’s not true–most of the time. The thing is how you feel doesn’t often affect other people, which is when it’s easiest for them to care. But the second you have to skip a bat mitzvah or ask your uncle to cut back on the number of sick sub-ohm clouds he chases in your vicinity, someone is going to get defensive. Or mean. It may only be momentary, but it happens. And sometimes you just have to take the hit on it.

I know I wrote a book about CF and keep coming back here to post pieces as time permits, but I hate being the “excuse me, I have a lung disease!” guy. So I often just let people think I’m an asshole (which isn’t necessarily untrue, either). I tend to exclude myself from social gatherings that require a tremendous change to my schedule, particularly around the holidays where I can lose a ton of weight if I’m not careful. Explaining to someone how easy it is for me to lose weight around the holidays isn’t necessarily endearing and kind of sounds like I’m just being an asshole anyway, but like any true asshole, I’m looking out for number one.

I’m not saying you shouldn’t push yourself, I’m just saying you–and only you–can know when it’s time to hit the city and when it’s time to hit the fridge for a sandwich so you have enough energy to take another nap. People may talk shit about you, but honestly chronic illness requires a degree of selfishness. You should always strive to be nice, but don’t kill yourself doing it. If everyone’s mad at you for not showing up to your sister’s baby shower, imagine how pissed they’re going to be when you’re dead.