“But, you don’t look sick” is a phrase I heard constantly while growing up with cystic fibrosis. Although most times this is meant as a compliment, it ignores everything I truly go through as a CF patient.
I was raised with an extremely supportive family, always pushing positive thoughts into my brain and reassuring me that everything would be OK. They held me to high standards with my academics. They motivated me on the softball diamond and the volleyball court. They encouraged me to be the best version of myself, without letting CF get in the way -- always making sure that I know that CF does not define Julia, it is just a part of Julia.
Growing up in my hometown, I was blessed to have made 10 best friends who grew up experiencing my CF journey with me. Even today, they keep countless bottles of digestive enzymes with them in case I forget. They know how to give me physical therapy if I ever really need it. My family and friends are my biggest support systems. However, when you are face-to-face with your own built-in adversity on top of the pressure of portraying a “normal” girl, the toll on your mental health is inevitable. I am constantly asking myself questions of why -- “Why me of all people?” “Why can’t my life be easy?” -- or questions of what if -- “What if I have to go into the hospital again?” or “What if my lung function decreases?” Having these mental struggles can be so frustrating because even the people I am closest to do not understand. Even my friends and family who know the disease like the back of their hands do not understand the mental aspects that I constantly try to block out.
As a CFer, the mental flares are inevitable when dealing with a chronic illness. I want people to understand that although I go to the gym five times a week or go out with my friends on the weekends, I am not always “normal.” Although my illness is invisible to them, CF is like a record player constantly turning in my head.
It is important to know that your loved ones won’t understand no matter how hard they want to and that’s OK. One thing that has brought me reassurance and comfort is conversing with other CFers who can relate.
As I grew up, outsiders perceived me as a normal girl. I did all of the typical teenage activities -- just add on a little cough and some medicine. Don’t get me wrong, I like appearing normal; but there is a part of me that wants people to fully understand the struggle of trying to maintain a normal 21-year-old life while dealing with cystic fibrosis.
I cough a lot. I spit up mucus. I need enzymes to digest meals. I have chest physical therapy five times a week. I culture nasty lung bacteria. I have countless bottles of medication in my car, cabinets, and purses. I get exhausted in the middle of the day. I avoid sharing personal items. My sinuses are filled with junk. I need more than 10 hours of sleep. I get anxious about the unknown. My skin is extra salty. It is hard for me to gain weight. This is me. This is CF. This is my normal.
You could call normal a compliment, but if I’m being honest, I don’t want to be normal. My life with cystic fibrosis has been amazing. I was awarded captain of my high school volleyball and softball teams; I got into one of the top business schools in the country; and I’ve traveled to Europe. Most of all, I’ve battled the most difficult obstacles in my life with strength and bravery.
I’ve never felt the need to hide my CF from people. For me, I am proud to say I have CF -- not because it is an easy battle, but because I am proud of the person that CF has made me. I think of CF as a blessing in disguise. Through the constant hospital stays, hour-long doctors’ appointments, and all things in between, I have become a strong, independent, and unstoppable young woman. I truly do not think that I would be who I am today without all the challenges I have faced with cystic fibrosis.
For all the CFers suffering with CF or mental health, my advice is this: Even when you might think the world is against you, prove the world wrong. Be proud of your accomplishments thus far. Be an inspiration. Be proud of who you are with CF. Don’t let CF define you.
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