Primary Ciliary Dyskinesia. What a mouth full. Leave it to me to get a disease that I can’t even pronounce or spell.
I was thirteen when I received this life-altering diagnosis. A diagnosis that, in my opinion, was far too complicated for a newly-minted teenager to wrap her head around. As time went on however, I became more familiar with what it truly meant to have a chronic illness.
Primary Ciliary Dyskinesia or PCD is a genetic disorder that affects cilia within one’s body. Cilia are crucial to human life because cilia are microscopic fibers that move things such as mucus, food, sperm, and/or eggs around in someone’s body. When someone has PCD, their cilia do not move or are sometimes even non-existent. This might not sound like a life-altering disorder but I can assure you that this disease brings about problems far beyond my body’s lack of cilia.
I’m not writing this to bore you with scientific facts about my genetic disorder, and I’m definitely not writing this to make you feel sorry for me. My intention is to hopefully ignite some sort of inspiration within your soul.
And here’s why: we as humans sometimes forget that everyone around us is fighting some type of battle.
Whether the battle is physical, mental, financial, personal, emotional, or a little bit of everything: we all have problems that we face. And PCD is my personal battle. Not only is it my battle, more importantly it is my battle to be won. I wake up each day completely unaware of what my day will entail.
I never know, until I set my feet on the ground, what type of day it will be. Will I have a migraine? Will I feel great? Will I start off the day feeling awesome and ending it feeling absolutely depleted? I truly never know. Because with a genetic disorder like mine, my body is constantly changing at rapid rates.x
I recall one day in particular during high school where I went to school feeling fine, and by 9 a.m. that day I had pneumonia. In an absolute blink of an eye, my entire day changed and unfortunately, this happens quite often. While my days seem to be ever-changing, the one thing that remains true about my disease is that I never once feel complete relief and more importantly, I never once feel complete relief from my nose.
This sounds funny, I know. But the largest portion of my disease that intrudes on my life is the fact that I must blow my nose repeatedly all day, every day, about every 2 minutes or so. I constantly feel as though I have a cold, I constantly have to blow my nose and trust me, it’s no walk in the park. I use over 1,000 tissues a week and I must always have tissues with me at all times, this is a non-negotiable. If I do not blow my nose when need be, I tend to feel worse than normal, and I almost instantly get an excruciating migraine that can last for days. I experience chronic fatigue usually every day, I almost always feel lethargic, and I experience lung problems along with hearing troubles and eye-sight troubles.
So why am I telling you all of this if not to bore you with facts on my disease? Because despite everything listed above: I am a full-time college student. I have a job. I write articles. I attempt to live my life fully, with zero regard to PCD. But moreover, I refuse to let my problems determine my joy. And I am imploring you to do the same.
Regardless of the circumstance, we cannot control what life throws our way.
The absolute only thing that we as human beings can control is the way we react to the challenges that life present us. So whether you are suffering from a chronic illness, or you have other setbacks that you face, I encourage you to push forward. We must lunge past the problems we face because we are worth more than wallowing in our own self-pity.
We are worth a whole, happy, and incredible life. We can sit back and let the waves of challenges wash over us, drowning us completely. Or we can stand up and fight. We can fight every single day to live life the way we deserve, regardless of the waves that are washing upon us, regardless of the struggles we face.
So whether you too find yourself feeling sick every single day, or you have your own personal problems that have nothing to do with physical health, you mustn’t give up. It doesn’t matter if you are sitting in a hospital bed with days to live or you are at home battling thoughts within your head. We must strive to be bigger than our problems, far better than our issues, and inconceivably stronger than the least-desirable parts of ourselves.
The many struggles we face in life will never go away, and I know that personally, I will experience quite a few more struggles in my life as a PCD-er. The good news is that while we may have to suck it up and take the problems as they come at us, we will also experience some amazing, awesome, and beautiful things, too. And believing that a good day, filled with wholesome and happy experiences, is right around the corner is simply the best thought of all. So let’s stay hopeful, shall we?