I Know It May Not Seem Like It Because I’m Coughing My Head Off, But I Swear I’m Not Contagious!
Okay, so as a girl with Cystic Fibrosis, I tend to have coughing fits WAY more than I plan to (thanks a lot, lungs). And when this happens, obviously people give me frightened looks as if I am dying of some alien disease that is going to take over the world and kill them too.
See, Cystic Fibrosis is genetic and even though it appears that I have the worst head cold of my life and it could infect you, I promise it’s just my lungs.
So on behalf of myself and my fellow “cysters” and “fibros,” here are 5 things you should know about Cystic Fibrosis so you can stop giving us those uber weird stares…
1. We Cough… All The Time
So as I said before, we have coughing fits a lot. Our bodies are always using coughing as it’s natural remedy to rid the mucus from our bodies. Because CF is so complex, we have all kinds of issues with our lungs. We tend to trap nasty bacteria that causes infections and inflammation (causing us to need frequent hospitalizations and intense IV antibiotics)… and if you’re lucky like me, we also can develop asthma on top of the Cystic Fibrosis. A lung disease on top of a lung disease is absurd but it happens. So next time you meet a person with CF who is coughing his or her head off, instead of scowling at them, CHEER THEM ON!
2. Don’t Judge Me For Making 5 Trips To The Buffet…
Seriously. As a person with Cystic Fibrosis, I have to eat anywhere from 3,000 to 5,000 calories a day… A DAY…This is to maintain a healthy weight. You see, our pancreas doesn’t get to do the job it is actually supposed to do because of all that gross, sticky mucus. So we take enzymes (that would normally come from the pancreas) in the form of a pill every time we eat…THAT IS ABOUT 40 PILLS A DAY just for digestion… so to maintain our nutritional goals, we eat a good bit WITH NO REGRETS.
3. There’s No Such Thing As Being Too Sweet… Right?
Because our pancreas doesn’t work like it’s supposed to, not only can we not secrete enzymes, but some of us (ME) can’t secrete insulin either… meaning we develop Cystic Fibrosis Related Diabetes (CFRD). SOOOOOO fun. It’s always a fun time when we have a random low of 34 and within the same hour have a high spike to 450 when our normal should be 120. Yes, I’m speaking from experience people. But thankfully there are insulin pumps that make life SO much better.
4. The Ocean Has Nothing On Us…
You know when you’re outside in the summertime and it’s hell on earth and it’s inevitable that you’re going to sweat (even if you are just walking from your house to your car) and it runs in your eyes? Normally, people just wipe it away and move on, right?? For a person with CF, it induces major burning, temporary blindness and sometimes tears. That’s because our epithelial cells can’t regulate the way our body’s salt passes through the membranes in our body making us have A LOT of excess salt that comes out in our pores. So when we say we are salty… I don’t mean I’m in a bad mood… I mean more along the lines of I could personally salt your fries with what comes off of my skin in the summertime.
5. We Are Some Of The Strongest People You Will Meet…
Dealing with work, relationships, school, and #adulting things requires a lot of strength and energy… take all of that and add in a full-time job of caring for your health and you get a whole new picture of strength. Not only do we have to make sure our physical health is maintained, but imagine the mental issues and emotional toll it can take on a person. Knowing that all you’re doing is maintaining… not curing. That’s perspective. We put on a brave face for others, but inside and behind the closed door, we are mentally exhausted and emotionally drained. If we’re lucky, we have an incredible support system of family and friends to back us and encourage us. But more times than none we are all alone with our emotions and thoughts. But nonetheless, we are not defeated. We carry on day-to-day and we will never give up. Because we have the hope that one day CF will stand for Cure Found.