I do not like how CF makes me feel isolated.

Everyone craves to fit in. Somehow during childhood our friends convince us being “normal” is the only way to be. We are afraid to differ from the norm for fear of being outcast. We just want others to think we're the same as everyone else. That is impossible.

Many times, I've felt trapped. I used to turn around to take my pills in public for fear that someone would simply ask why I have to take strange-looking pills. I would want to hide my all treatments when people came to my house so I would not hear the inevitable “what are those?” Even entering college, I was afraid that some of my suitemates would hear my loud vest through my dorm room and tell me to shut it off. 

It is hard to not feel isolated when you have a disease with many complicated aspects. It is also hard to predict how an outsider might react to a seemingly “normal” part of cystic fibrosis. But, it is so easy to detach ourselves from others because we think they would not be able to understand how we live our lives. Even supposedly mature college-aged students can brush off CF and treat it like it will be gone tomorrow. They can compare it to another debilitating disease and say CF is not as bad as that one.

They can bring it up like a sore wound and pity me when I do not need to be pitied. I am not ashamed of having CF, I am not upset at the world for giving me CF, and I do not feel powerless.

Yes, having CF does make me feel isolated at times, but not every hour of every day. Not having someone you can talk to in person who understands your exact problems can be disheartening. Non CFers can make comparisons to my breathing by telling me that I sound like them after five miles of running, or how they could hear me breathing across the track like it is a game of who can breathe heavier. They can tell me that they know what CF feels like after being bloated from eating a large meal. They can try to make comparisons, but the truth is that the only people who can relate to us are other CFers -- and we can only talk to them online. This lack of personal communication is isolating and hard on my mental health.

I love how CF has given me such a strong support system.

When I feel most isolated, I reflect on how strong my support system is to help me get through it. Being a quiet little girl who used to barely say two words at my clinic visits, I never expected my CF care team would become a second family. To my amazing, inspirational doctor and positive, caring nurse - you have made me who I am today. I feel so lucky to have CF when I am able to appreciate these special relationships. I am so lucky to have my mom, who never fails to turn away every time I get my throat swabbed, and my dad, who sits with me as I get my annual labs drawn. And my friends, who would sit with me while my vest would rumble the couch and the TV was on full blast, I do not know how to thank you enough. 

 My support system has allowed me to follow my dreams, from encouraging me to keep running every day, to funding my travel expenses to appreciate this incredible world. They have made me feel so much love, even in times of struggle and isolation. There is so much love to be given and received in the world, and in times when you think there is no way out, there is always hope.

Now, more than ever, it is important to find at least one positive aspect in our common struggles. If we make a habit of only focusing on feelings of being trapped, isolated, or anxious, only those negative forces can dominate. But, if we can somehow find one thing we are thankful for, we can escape the negative feelings of isolation.

We can do this by appreciating the support of the CF community. Even though we may not be able to physically interact with each other, there are always ways to reach out to the community. Adapting to connecting online is the key to enhancing our interactions with other CFers. Our community is exactly what we need to feel appreciated, loved, and encouraged by people so similar to us.

Interested in sharing your story? The CF Community Blog wants to hear from you.