I Look Like Them

Cystic Fibrosis (CF) is a physical disability but cannot be seen. It plagues every day and every action. It makes you rethink every single move. You end up asking yourself, "how badly do I need that glass of water on the counter?" Something so simple can throw a CFer into a 30 minute coughing fit. However, we don't look like we are disabled. Sure, most of us look like we have an eating disorder and dark circles under our eyes. But besides that, unless we tell you we are sick, the general public would never know. Ever since I was a young child I was told I was the "poster child" for those living with Cystic Fibrosis. I always took all of my medication. I always did my treatments. I was very active. I ate great with no weight problems. I did everything I could possibly do to stay healthy. Because of my compliancy I was rewarded with praise that I never looked like I had CF. I didn't have dark circles under my eyes. I wasn't extremely skinny. I didn't have any scars on my body from surgeries. I didn't have clubbed fingers. I grew used to hearing I don't look like them. For that, I was very proud. As I grew older I noticed people would ask me every once in a while if I had CF. I realized I am starting to look like them. I became self conscious about this. After my transplant I have noticed I have been asked more than I ever have before my transplant. Last night I was in Walmart out of my hometown with my friend Leah. Shopping for a few pageant items, a lady was looking at coffee. We walked by the coffee and I made a comment about how I thought Macadamia Cookie coffee sounded very unsatisfying. The lady asked if we saw any hot chocolate and we helped her and her daughter look. We didn't find any but before we parted she asked me, "May I ask you a personal question?" With no shame in anything I replied with permission. "Do you have Cystic Fibrosis?" And with that question I saw Leah's jaw drop. I smiled and said "Yes I do. I'm actually almost 5 months out of my double lung transplant." With excitement and gratitude she praised the Lord and hugged me. She went on to tell me how she lost her son to the battle with CF. A harsh reality we CFers face is that we don't live very long. The other woman asked how she knew I had CF. She said because of my voice, my fingers, and my attitude. I said "there's something about CF, we just know" We exchanged contact information and carried on our shopping separately. I realize now that in the CF community I do look like them. I am proud of that. It's a beautiful thing to realize you're not alone in such a terrifying life. There's nothing easy about CF but to know that I have the complete support of the CF community is satisfying. I know I have support from many many more people, for that I am grateful. But it is different coming from people experiencing the same life. It's nice to be reassured I am not the only one.
XO- A