The one thing that has been drilled into my head the most growing up is that CFers can be very dangerous to each other. The infections and bugs that we grow in our lungs can be very contagious. Therefore, we are not supposed to be within an arms’ length of each other at the closest. This makes it really hard to meet the people who you can relate to the most. It is extremely difficult to explain to other people what exactly it is like to live with Cystic Fibrosis. Even our friends and family who are around us every day, or even live with us, don’t understand. They can try and be sympathetic, but they will never know what it feels like to struggle to breathe or to feel like you are living just to keep yourself alive with countless hours of treatments.
I was lucky enough to have a pen pal growing up. We were set up by our parents when we were about 10 years old. Even though we never talked about CF when we were young, it was really nice knowing that there were other people like me out there. Instead, we got to know each other by talking about music and other things that struck our interest at the time. Just like normal kids. It wasn’t until we were in our “adult” years that we really got to talking about the real stuff. By then we had exchanged phone numbers and could call or text, so had ditched the “old-fashioned” letter writing. I can’t begin to tell you the immense support having this ONE person who could relate so easily to me. I know I did the same for her. Today she would have been 25 and I miss her with all my heart. This is the hard part about having support from another CFer. They get sick, just like you. However, I am nothing but grateful. It is because of her friendship that I decided to branch out and meet other people with CF.
I had no idea where to start meeting other people who had CF. There aren’t any support groups or anything because we aren’t allowed to meet in person. Then I realized that I live in the 21st century and there is this website called Facebook that was created for the sole purpose of connecting with people! So I started joining groups that were for people and supporters of CF. It took me quite a while to find anyone that I really connected with. I was getting really discouraged and gave up for a little while. Even though there were so many people that were a part of these groups, I just couldn’t find anyone that I connected with. So I left the one or two groups I had joined and went on my lonesome way again. Then I started to get sicker and all I wanted to do was talk to my friend that had passed. So I knew I had to fix the situation and make new friends. I rejoined some groups on Facebook and started following some people on Twitter and Tumblr. My final step to connecting with other CFers, and myself, was starting this blog. Now I am happy to say that I have a new CF friend that I rely on to talk to about all the stupid CF crap that you have no idea how to explain to someone who doesn’t have CF. I love finding new people to connect and talk with. I also get to get advice and support from other CFers on random subjects and questions.
I am beyond thankful to my parents and my pen pal’s parents for setting us up 15 years ago. Even though Cystic Fibrosis is an incredibly physically taxing disease, it can also be a mentally taxing disease. No medicine can fix that, only finding people to share the aches and pains with can truly ease your mind. I am also extremely thankful for the people that have become my support and friends in the last year. I hope by reading my blog, some of you more shy people out there can find some comfort in knowing that there are others out there who share some of the same experiences as you. Finding the right support is no easy task, so please don’t feel discouraged!
I love you all and am happy to provide whatever support I can to help out a fellow CFer in need! Never forget about the friends and family that are in your immediate company too. They may not be able to understand, but they sure are good at loving you and doing what they can!
Feel free to follow me on Instagram (@wendycaroline91) and Twitter (@wendycaroline91) to experience all the random things I do and think about! Also, be on the lookout for a “Links” tab to find all the cool websites and Facebook groups that I have really found to be helpful. Lastly, make sure you head over to my Facebook page (The Living, Breathing Wendy) and like the crap out of it (and share it, of course). THANK YOU.
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