This blog post touches on the invisible disease side of things. I know I went pretty deeply into that with my little story about almost getting tazed on an airplane ride from Boston to New York (https://www.gunnaresiason.com/i-hate-the-color-purple), but this is a little bit of a different take on the subject.
I recently saw an article online (http://www.cosmopolitan.com/sex-love/advice/a7212/things-not-to-say-to-a-non-drinker/) about a few things you should never say to some who doesn’t care for drinking. For the record, I don’t actually read Cosmopolitan, but Blake Lively is super hot and I think that picture of her is why I found myself on the website. I will say, though, it’s amazing what you find yourself clicking on when you go through your twitter feed (follow me @G17Esiason BY THE WAY). Either way, I thought it was kind of witty and gave me a good laugh, but more importantly, the article made a pretty good point – there are a bunch of things that are off limits when it comes to talking to someone who chooses not to drink.
I want to write about a few things you probably shouldn’t say to someone with CF, unless of course you are looking for a fight. Don’t fight anyone. That’s dumb.
As a side note here, I am speaking to pretty specific “you.” Personally, I love when people ask me about my disease, because I think some people are actually looking for legitimate answers. I am obviously pretty comfortable talking about my little health issue, but really, conversation about CF gives me a chance to educate anyone asking about it, and beyond that, it only furthers awareness for the disease. On the other hand, though, I don’t love when people make stupid little remarks behind my back. The kind of person that casually knows me, but doesn’t quite have a full understanding of what I go through on a daily basis and to be completely honest, the kind of person who doesn’t really care. From my little airplane incident, I think you should be able to tell that I can flip the switch and go into Hulk-mode if needed. So here we go, 15 things you probably shouldn’t say to someone with CF… if you don’t really know what you’re talking about.
- Why the hell does your breath stink? Come on, man. Do you actually think the sh*t in my lungs doesn’t have a smell. Guess what – I can taste it too and it doesn’t quite have the same flavor as mint-chip ice cream. I promise you I brushed my teeth today. I hate going to the dentist, so I brush those bad boys 3 times a day, and the smell still won’t go away.
- You’re looking a little skinny these days, huh? Yes, you’re right, thank you captain obvious. That little mushy thing inside my body called a pancreas doesn’t work so well all the time. Food goes right through me sometimes. Yup, there’s a good mental picture for you.
- You hardly ate anything! I know. I know. Listen, I don’t want to be wasteful. I try my hardest not to be, but nausea can come on real fast. All the bacteria in the lungs – totally not meant to go into the stomach. You can do the math here.
- You have alien fingers and toes! Actually, I kind of think this one is a sort of funny and I totally embrace it, but it is a sensitive point for some people, which I completely understand. I love my little (they are actually pretty big. You know what they say about big hands?) alien fingers. I also have the world’s biggest toes. If you tell me that you know someone with toes bigger than mine, then I call you a liar. Science calls my alien fingers and toes “clubbing.” That happens when a limited amount of oxygen gets to the extremities, and as a result my fingers and toes are curvy. Science. Head, shoulders, knees and toes, knees and toes.
- Did you just destroy that bathroom? LOL. I may have. Remember that point about the pancreas. Well, here’s the deal, fat sort of smells, and when it doesn’t get digested properly and goes right through me, things like that happen.
- Would you cover your mouth when you cough, please? I’m trying my hardest, people! You try making a move to your mouth 300 times in a single day. Oh, by the way, I promise you won’t get sick. In fact, I pinky swear.
- Wow that sunburn, just wow. Yeah, I know I can feel it. You don’t have to tell me twice. Remember my summer tips from a few weeks ago (https://www.gunnaresiason.com/summer-tips)? Those antibiotics and the sun don’t mix. I sure as hell take enough of them.
- The surgical mask on the subway, really? I don’t know how many times I have to write about this, but this little issue is really a never ending up hill battle. I mean, I’m not even going to link to the other stories in my blog about this, it’s mentioned in every freakin post. People are just so damn judgmental about surgical masks in public. The outcry is nearly as bad as the selfie stick phenomenon. Don’t use a selfie stick in public – don’t be that person. The flu and CF don’t mix. Hopefully the conversation about this ends here.
- You want me to get vaccinated? I have never gotten the flu shot or any of those things. Get to the doctor and get your ass vaccinated. Since we are talking about the flu again, let’s just set the record straight – I don’t need the Measles either. I get poked about 9 million times a year, give or take – you can do it once for a vaccination. You aren’t bigger than the rest of the population; you’re actually helping other people out by getting it done. Don’t be selfish.
- Are you really going to park in the handicapped spot? You know, there are people who are actually handicapped, right? You’re an asshole if you say this to me. Don’t be an asshole.
- What happens if you don’t do your treatments or take all those pills? Are you serious? I, uh, die….
- Do you still have that cold from [the last time I saw you]? Ugh, yes, I still have that cold. I’ve had it for 24 years.
- You’re having a bowl of ice cream for breakfast? Yeah, it’s coffee ice cream, my favorite! You have coffee in the morning too, don’t you? See, we in the CF community actually need fatty foods, really just about whenever we can get them. What better than ice cream? SHOW ME A CHILD THAT DOESN’T LIKE ICE CREAM! Best childhood ever, right here. Can’t you tell? I’m so lovable and sweet. (For those of you keeping score at home, that was a pun – ice cream is sweet and everyone LOVES ice cream. Come on, you’re better than that)
- Can I… like, lick you? Okay, this has actually happened to me, more than once oddly enough. While it may seem like a gross thing or something you may stumble upon after a weird Google search, but on the scale of grossness, it’s somewhere near the bottom. As soon as people put together the whole salt thing associated with the disease, it’s like people actually want to give it a try. They want to test it for themselves… or something along those lines, I’m not quite sure why. “Nah, you’re lying! You don’t have CF, your skin isn’t salty!!!!” But, like some of the other things in the list, this one can be a real knee slapper when I go along with it and someone actually ends up licking my arm to taste the salt. What’d you think, I was gunna let them lick my face or something – wrong website. Without fail, there is ALWAYS a “holy sh*t” moment when the person does realize that I do, in fact, taste salty. I’m best served medium-well… just for future reference.
- How do you live like this? It’s everyday life, that’s how. There are different ways to handle some of these things. You can take the France approach and just let people roll right over you, or you can take the America path and unleash the fury. There are times when either option is acceptable, but personally I love the American way of answering some of these questions… it usually makes for a pretty good laugh in the end. Like Russell Crowe says in Gladiator, “Unleash hell.” Seriously, though, I think it’s important to be able to laugh at ourselves in some of these situations, because in the end, if we can’t laugh at ourselves when it comes to these idiotic things that we go through, than what the hell are we fighting for anyways?
Here’s my reading list lately!!
Band of Brothers – Stephen E. Ambrose
Killing Jesus – Bill O’Reilly and Martin Dugard
Black Hawk Down – Mark Bowden