Growing up I felt I never fit in. I was painfully shy and my insecurities would get the best of me. I always felt I had an invisible sign on my forehead advertising I was sick that people would somehow be able to see. Nowadays, I know that there was no way for them to know the full extent of what was going on, but that didn’t stop 8 year old me from feeling awkward when it was time to leave class early to take my medicine for lunch. Or 13 year old me having to learn to swallow pills because my diabetes diagnosis prevented me from consuming my enzymes with syrup. And then again when I had to leave a class discussion and deal with a low blood sugar episode. Those anxieties that felt all eyes were on me added to my shyness. All I wanted was to feel like I belonged.
I had my friends and we’d hang out at the pool over the summer or spent hours at the mall thinking we were hot stuff while we talked about Team Edward or Team Jacob. I did have a social life like any other preteen. However, the anxieties were always there no matter what. I was the sick girl.
It was never easy for me to express my feelings, especially family. Even in my own home I was shy and unsure how to act at times. I remember feeling so much like a burden with my health and being in the bath tub sobbing to my mom that I’m sorry I’m so expensive. So many doctors and medicines and copays.
There was no where for me to belong. I continuously felt like an outsider. People would try their best to relate but it only intensified my feelings of not fitting in or being normal. There was no where for me to turn for comfort. I had to keep my inner thoughts to myself and put on a mask everyday.
Bit of a time jump, but around my freshman year of college I joined the smart phone generation. I was excited and searching for all kinds of apps. I had heard of apps to help manage diabetes, so I curiously typed in ‘cystic fibrosis’ to see what there was to offer. Low and behold, I found what I call the CF version of Facebook (sadly has since been discontinued). A type of online community for people to share and chat for those with CF. I joined and met my first CF friends. I felt validated. I felt heard. I felt I could finally find the place where I belong.
Countless conversations with ‘omg me too!’ started what would become the most meaningful friendships. We connected on a deeper level, a level that not many others can understand. I was no longer the outlier in life because finally there are others just like me. Others who can share the same insecurities and can give me the comfort I need.
I still struggle with feeling ignored or not fitting in with friends and family. I still feel like a burden in a variety of ways. I still feel shy when it comes to certain things and find it difficult to express certain emotions because most people don’t get it. 2019 was the worst in every sense and I was the most alone I have ever felt. I don’t know where I’d be right now if it weren’t for some CF friends. When my sanity was wearing dangerously thin, they were the ones who kept me from completely falling apart.
In the past hearing the phrase ‘cf community’ never really meant much to me. I even thought it was weird to describe it like that. We’re just a people with an illness. To me, ‘community’ seemed like a neighborhood or something. Maybe I didn’t comprehend fully the meaning of community. I now recognize it’s the feeling of belonging and acceptance. I found my place. I found the place I can be understood and be me. I found my community. There are certainly times I am not involved as I could be or don’t talk to CF friends for ‘x’ amount of time but whenever I do reach out, I’m back where I belong and the connections are so fulfulling.
All this to say I grew up thinking something was wrong with me. It’s something I honestly continue to battle on a daily basis. But I now know it’s much more than that. Nothing is wrong with me. It sadly took a while to find my place.
To all my cysters and fibros, those continuing the fight and those flying high breathing easy, thank you for everything. Thank you for the FaceTimes and inside jokes and long texting conversation threads and ultimately genuine friendships. They mean more to me than you’ll ever know.
Broken yet Breathing 