When I was just a year old I stopped gaining weight, I was sick often and as time went on I continued to get worse. Failure to thrive lead to being diagnosed with a genetic disease called Cystic Fibrosis. My life changed course before I was old enough to understand. Cystic Fibrosis is an invisible disease everyone likes to say. It is true, don't I look healthy? Besides my numerous IV tube scars and continuous cough I seem pretty normal. I like to say I live a double life as if I’m Hannah Montana or something. You can’t tell I’m trying so hard to breathe, so hard because I'm breathing with less than half my lungs. Most just think I have a constant cold which is kind of bothersome because I’m not infectious I promise! I've had to explain to a lot of people what my disease is due to it not being very common.
On the bright side I had an amazing childhood, I was happy all the time. I played a lot of sports, even with having a chronic disease. It wasn't until 4th grade that I began missing school due to my weak immune system. I was constantly getting sick, which for me easily turned into lung infections that kept coming back overtime. Depression became relevant in my middle school years but I didn't quite understand it yet. I had lost myself in all the treatments and had begun to feel sorry for myself, in a way. When living with a chronic illness you sometimes have to grow up too fast, I matured very young and lost my adolescence. I had begun to think negatively of my doctors, dreaded the appointments, and hospital stays felt longer than ever. I would argue with my family and lock myself in my room to avoid a lecture. It wasn't until my sophomore year of highschool in which I went through a really hard time mentally and physically that I got extremely close with my family. They always say love is the best medicine, they're right. Things from then on started looking up and I began to face CF head on with courage.
My frequent lung infections had me coughing throughout the day and night keeping me and my family awake. It was never easy and we never got a break. I’m the only one in my family with Cystic fibrosis but it is a “we”. Diseases affect you and everyone around you in a variety of ways. I have been blessed with the most supportive sisters, parents and friends. There have been times where I felt like I was a burden, always needing to be taken care of. I believed I didn't deserve the love and treatment I was receiving because others were not. I was so thankful but felt so alone all at the same time. I once believed that ending my own life would be better for everyone so they can live their lives and not have to live mine with me. Through all those times I’ve gotten support and love from everyone around me. I learned that all I can really do is fight for myself the way everyone else fights for me. Treatments wont save me and sitting on the couch all day feeling sorry for myself won't make me any happier.
I remember when me and my family were sitting around watching american idol, when american idol used to be good. There was this boy a little over 18 auditioning and he brought up how he had CF. He said that the life expectancy was 20. My parents had been trying to protect me from that, saying that it's not the case for everyone. This happened when I was in elementary school and little did they know I had already googled it. Since this was around 2009 the expectancy has changed its gone up most people are expected to live longer. 2010 babies can live till their late 30’s which is a huge deal. New medicines are coming out. I've been in a few clinical trials the past three years and the improvements that have been made make me hopeful. I’ve never let my expectancy affect me mentally, It's only a number, a number that I have the ability to manipulate. If I could take the disease away I would, but it’s made me into a person I never believed I could be. Ive been able to inspire people, speak at some big events, raise tons for charity, things I would never have had the opportunity to do without CF. It’s been a long journey that isn’t over yet but my invisible disease is only a part of my life something that I’ve kept a little out of sight and I think the world deserves to know about it.
