It has been said that communication is the best source of therapy, however, most Cystic Fibrosis patients tend to struggle with this theory. For as long as I can remember, I preferred to keep my CF life completely hidden. I would bottle things up in attempt to defeat the invincible alone. I have always found it to be more pride related than anything because of this need to single handedly destroy our attacker. Luckily, however, as our disease progresses, usually so do our inept communication skills along with our willingness to confide in those around us. It was not until my sophomore year of college that I decided I did not have to fight my battles alone, and that decision alone transformed my entire outlook on the disease that I was battling every second of the day.
Throughout my middle school and high school careers, I always found there to be an assumed stigma associated with having CF. I’m sure the concerned stares after an unceasing coughing fit had NOTHING to do with it;) Looking back, it may have been more of a mental insecurity rather than a reality. I figured out quickly, though, that just because constant coughing fits, medications, and breathing treatments were normal to me, doesn’t mean that everyone was going to automatically know how to react. It is negligent to expect one to walk a day in your shoes if you don’t even share the size. This reality hit me like a ton of bricks, and before I knew it, I decided to let my guard down.
From that moment forward, I started welcoming people in… but very slooowwllyyy. I began, first, by tattooing myself. Yes, I absolutely could have started with something easier, but in my logic, it was the easiest way to incorporate the normal world with my completely abnormal one. So, I tattooed the verse Romans 8:18 in roman numerals meaning,
“the pain you are experiencing cannot compare to the joy that is coming,”
on my foot. Now, despite my best efforts in masking my reality, the fact that I was living with Cystic Fibrosis was no secret. However, I didn’t tell a soul what the tattoo really meant. I simply used it as a reminder for myself that no matter the suffering that I am experiencing, God has a greater plan for me ahead, and that was enough for me.
Next step: tell a friend. This step was one of the most difficult for me because all throughout my childhood, I never desired any attention when it came to CF. I found that, usually, with attention came pity, and before I knew it, I would find myself staring into the eyes of my worst nightmare. So, luckily, I found my person during my sophomore year of college- my very best friend who knows every detail of my life… Probably more than she originally signed up for. I opened up to her about Cystic Fibrosis almost immediately, which was very out of character, and her reaction is truly what led me to trust. She did not express how sorry she was for me or that my poor pitiful soul doesn’t deserve bad things in life. No. She was simply there for me. She related to me. She listened to me. And that is all I had ever looked for in a friend. I then brought her on a four-hour (yes, you read that correctly) road trip to my clinic visit so she could get a better feel for what I am battling each day. She sat quietly as I rolled my eyes at medical students, blew every ounce of air from my body into the PFT machine, and listened attentively to my doctor. She was, is, and will always be more than anything I have ever wanted in a friend.
Lastly: the article. This step actually began as an assignment, continued as a mistake, and ended as a miracle. After a very difficult semester health-wise, I was given an assignment by my English professor to make up for the copious amount of absences I earned in her class throughout the semester. She decided to request that I write a blog describing my experience with Cystic Fibrosis so far and how it affects my life. I rolled my eyes at the sight of this email thinking, “this is going to be too easy.” I quickly became motivated and flipped the screen of my laptop computer. My fingers swiftly brushed over the keys as words flowed from my mind onto my computer screen, and before I knew it, I had written ten pages of pure thought on the matter. I was proud of it- not because of the facts it contained, but because of the positive light it reflected on my situation. I wanted to use it for more. I knew that it needed to be so much more than just an extra credit assignment. I wanted it to move people- to change lives for the better and to improve perspective. I logged into WordPress and began typing and after reading and re-reading about thirty times, I clicked “Publish,” closed my laptop, and went to bed. I remember waking up the next morning to the sound of notifications appearing on my screen, one after another. My heart sank. I posted my article on Facebook for the entire world to see. Now, as a girl who could barely say the words “Cystic Fibrosis” without turning as red as a cherry, this was nothing less than a nightmare. But then I slid the screen… I read the comments… And I smiled. The amount of support I got from sharing my words shocked me beyond belief, but also brought about a sense of relief- like I wasn’t so alone anymore. My little nightmare became the biggest blessing I could have ever asked for in a matter of minutes.
From the permanent ink to the spoken words and Facebook posts, opening up about the largest aspect of my life was never easy. Looking back, however, it was the best thing I ever managed to accomplish. A month after my article posted, I received emails, text messages, and phone calls from people who were not only supporting me and my fight, but who were touched by my words. MY words. Before that moment, I never believed that I even possessed the power to assist others. I never understood, growing up, why people within the CF community felt SO strongly about fighting the disease. I always just thought it was a part of life and I fought it but I did it alone, and I was never passionate. I didn’t really know what I was missing. And then I met all those who were supporting me in my fight along with all those fighting for their lives every day within the CF community. And at that point, I was no longer fighting for myself- I was fighting for them. And that is really what sharing your story is all about.