As humans, we have the need to talk and socialize with people who know what we're experiencing. Living with cystic fibrosis makes it hard to interact with other people with CF because of guidelines created to prevent cross-infection. While the guidelines are meant to keep people with CF healthy, they have created a gap within the CF community. This can make us feel isolated or alone because we do not have someone to relate to. However, in recent years, the gift of the internet and social media has been able to bring people with cystic fibrosis together.
In the summer of 2015, I was diagnosed with cystic fibrosis liver disease and was hospitalized for a month. The days passed slowly, and YouTube was what I used to pass the time. The typical vloggers I watched seemed so perky and said the same clichéd intro to their videos, “Hey guys! Today's video is super exciting!” Blah, blah, blah. I liked the YouTube creators that I watched, but honestly, I wanted to watch someone I could relate to.
So, I typed in the words, “cystic fibrosis vlog.” I knew I had found something special when I watched the very first video. I was struck by how these vloggers were able to find the positives amid all the difficult circumstances they were experiencing. I began finding more YouTube creators who had CF. I felt like I was able to relate to their experiences and that someone understood me. Yes, doctors and parents understand cystic fibrosis, but they only understand it to a certain extent. They aren't able to experience how we feel, or how we wished we felt.
I realized that since these videos were having such an impact on my life, maybe my story could impact others too.
During my hospital stay and throughout my senior year of high school, I began working on my YouTube channel. I wanted to create videos that brought a positive perspective to living with CF and a friendly face that understood the ups and downs of this illness. I launched my channel on May 31, 2016, and soon after I began connecting with other people with CF from around the world. Not even one year into having my channel, I helped create a collaborative channel with six other girls with CF. One year later, I left and joined a different collaborative channel and got to connect with even more people. I am honored to have been a part of these channels -- I have looked up to the creators for a long time and am blessed to be able to work with them.
In addition to YouTube, I have also met others with CF through Instagram and Twitter. Social media and video platforms have closed the gap between those with cystic fibrosis and brought people together from around the world. This has helped us to not feel so alone and like we have someone that can relate to the ups and downs of our daily lives. The CF community inspires and lifts each other up through the hard times. That is what's so special about our community, and I am thankful that social media has been able to bring us together and make our connections stronger.
