Fun fact: I have a lung disease. It's called Primary Ciliary Dyskinesia and it affects the cilia throughout my body, primarily in my airways. Basically, the cilia don't work. For anyone who isn't aware, your cilia are responsible for moving your mucus, and mucus is responsible for hoarding all germs and dirt that collect in your airways. So when your cilia don't work, your germ/dirt packed mucus just sits in your lungs and sinuses. Coughing is the only thing that moves the mucus. As you can imagine it's impossible (and probably fatal) to cough 24/7, so PCDer's, as we are called, have a constant abundance of mucus just hanging out gathering all the dust, germs, and dirt we breath in.
PCD is genetic and incurable. Therapy and other medicinal treatments are our only option for controlling our symptoms, and even those barely scratch the surface sometimes. It's really hard to imagine a life without PCD, as I have found it consumes a lot of my time and even more of my energy. After 21 years of living with PCD there are some things I've learned, the following are just a few.
Side note: About half of those with PCD also have something called Situs Inversus Totalis, which is the condition where all your organs are backwards. Ex. The heart is on the right side of the body instead of the left, the left lung (two lobes) is on the right side (which typically has three lobes), etc. And as luck would have it, I have that, too.
1) You Are Different
If you have ever subjected yourself to watching an inspirational movie revolving around someone and their illness or disability, you know that the underlying message is always "you are just like everyone else." Well I'm calling bull on that one, because if there is anything I've had to learn living with a chronic illness it is that I am different, and that's O.K. In fact, in most cases it's a really good thing to recognize, because the sooner you do, the sooner you can accept the fact that if you smoke, you die. If you try to be a pole vaulter, you die, etc. etc. whatever the case may be.
When there is an entire part of your body that just doesn't work, things are going to be different, life is going to be different. If you constantly try to keep up with others and find you can't, you will compare yourself to others, and you are going to suffer a lot more. Acknowledging your differences does not mean limiting yourself, it means accepting the fact that there are things you need to do that others don't, and those things change your lifestyle.
When there is an entire part of your body that just doesn't work, things are going to be different, life is going to be different. If you constantly try to keep up with others and find you can't, you will compare yourself to others, and you are going to suffer a lot more. Acknowledging your differences does not mean limiting yourself, it means accepting the fact that there are things you need to do that others don't, and those things change your lifestyle.
You have to be aware of your limits and be cautious. It's hard sometimes to find the balance between being careful and letting your disease/disability define you, but taking care of yourself is your main job and always will be. You don't have the luxury of doing whatever you want whenever you want, failing to realize this can be depressing because you can feel inadequate. You're not inadequate, you just have to make your health a top priority when others don't.
2) There is Pain
This one's a bit dismal, but complete truth. There is pain. It becomes so much a part of life that breathing and feeling every last snap, crackle, and pop is just breathing, and you don't flinch anymore. Searing, stabbing, lingering, widespread, focused, burning, gassy, muscular, pressing, building, throbbing pain. Take your pick, you will feel one of them at some point every day. Whether it's just when you cough, when you inhale, when you exhale, when you sit in a certain position, it doesn't matter, it is there. Just the other night, I was laying in bed when I yawned and it felt like someone had shoved a stick up my nose.
Some pains are not a big deal anymore and don't even bother me, others are still a little shocking. At the end of the day it's about 40% attitude, and 60% sucking it up and doing what you have to do, despite the pain, and however much you want to stay in bed.
3) People Will Think You Make Up Half the Words You Say
When your disease is rare you can stump even the most educated medical professional. Once I was at the dermatologist's and one of the resident students saw I had Situs Inversus, and he started asking questions. He kept leaving the room, coming back, asking a question, then leaving again. He hadn't seen Situs Inversus since med school, and that was in a cadaver.
When I tell people I have PCD they look at me like I have six heads, as if I have oodles of time to sit around and make something like that up. There are far too many doctors and nurses who don't know what PCD is, and they typically only have the tiniest idea what Situs Inversus is. If doctor's don't know what it is, you can imagine how confused the "Average Joe" is. Primary, Ciliary, and Dyskinesia put together are bit confusing, especially since Dyskinesia just sounds fake. Augmentin, Prednisone, Azithromycin, Xopenex, Levofloxacin, vest therapy, PFT, and many more are all part of your vocabulary from a very young age. You know you're a PCDer if reading medicine bottles was part of your elementary education.
4) Your Health Relies on Trusting Yourself
My mom keeps a binder and records everything that is discussed during doctor's visits, as well as every time we get sick. This means when my doctor suggests something, my mom can flip through her notes and know if we've tried that before, if it worked, etc. Knowing your body, it's limits, and what it responds to is critical to keeping a status quo of health. Trust yourself. You know the patterns, the signs, the things you can handle. Trust that, with the help of your doctor, you can both figure out what works and what doesn't.
5) Your Medications Rule You
This is another dismal one. Unfortunately, I've found that skipping a treatment = two days of recovery. Forgetting the allergy pill I take regularly means feeling extra junky the next day. You aren't aloud to forget you have an illness. Sometimes it's easy to forget that you're body is not prepared to survive on it's own.
6) Roll With It
This one is pretty simple. I've found that fighting doctors, and procedures, and worrying about surgeries does no good. Roll with it. Do as you're instructed and, chances are, you will be just fine. :)
7) Lying = Fewer Lengthy, Awkward Conversations
Remember when I said people look at me like I have six heads when I tell them I have PCD? Yeah, I've learned to lie. When I cough I sound like I've been chain smoking since birth, and I get super weird looks. I've been asked by kindly old ladies if I'm sick, and I lie and tell them I have a touch of a cold just so I don't have to explain PCD. I realize this doesn't do much in the way of spreading awareness, but as a kid, or just someone who likes to avoid lengthy human interactions, lying seems easier.
8) One Thing Stops Working, It All Stops Working
Being sick all the time means lots and lots of medicines. Lots and lots of medicines means side effects. Side effects means no other part of your body is willing to function properly. Extensive exposure to medications leads to constant damage, or at least, that's what it feels like. GI issues seem to be the biggest problem,which is just a joy.
Also, that whole 'diseases come in three's' thing? Yeah, that's real. As I got older more problems cropped up, each one more frustrating than the last. There are times when you just feel broken. Fighting that feeling is hard because the root of all your issues is genetic, chronic, rare, and incurable.
9) You Have a Health Card, Play It.
In college they always force everyone to participate in the devil's favorite form of torture - ice breakers. Don't deny it, they suck. I have found, however, it's actually pretty great playing the health card and flooring everyone with the fact that my organs are all reversed - Sorry third nipple dude, I win.
10) Don't Be Scared
Between the aforementioned pain, doctors and nurses asking all sorts of questions and requesting all sorts of testing, weeks of sickness that seem to break you down, therapies that are time consuming, medications that cause more issues, procedures and surgeries, and the constant threat of hospitalization due to the tiniest bit of any illness, living with a lung disease can be pretty scary.
The following is a music video for the song "We're All a Bit Scared" by YouTube artist Tom Rosenthal. I find this song oddly comforting. The lyric "don't be wet" is a way of saying be strong, or don't have a weak character. The artist is the one holding the baby :).
PCD is what I have, not who I am.
~ The Campus Curmudgeon
October is PCD Awareness Month! http://www.pcdfoundation.org/
