I Struggle with Feeling Like an Outsider in the CF Community

A cliché exists in the world of reality TV: the contestant who says they’re not there to make friends. I never meant to be that person, but I’m afraid that’s whom I’ve become. 

When you have a rare disease like cystic fibrosis, which affects more than 30,000 people in the U.S., many believe that the community must be fairly close-knit. But as an outlier in that community, I can say that this isn’t necessarily true. I feel slightly ashamed to admit that I don’t have many friends with CF — I can count the number on my fingers — and I fear that I’m mostly to blame for that. 

Part of it is my desire to keep myself from getting hurt. I spent a lot of time during my teens and early 20s on various blogs, taking initial steps to find people who were like me. I formed some early friendships with others who had CF, and then one day they were no longer there. Some mysteriously vanished. I hope they’re doing well. I want to believe that they became too busy with their rich, fulfilling lives to spend time online anymore, but I’m afraid that’s not the case. I fear that they, like some of my other early CF friends, passed away.

It’s difficult to articulate the grief you feel when someone you’ve only known online passes away. You don’t feel as if you have a right to be sad, but your chest seizes up and you cry into your pillow anyway. You start to wonder when your turn will come — especially if the death is sudden and traumatic. I don’t want to see the people I love die. I’m so tired of being afraid whenever they get a cold and struggle to breathe. 

But maybe we shouldn’t expect everyone with the same disease to be friends. Besides the commonality of our disease, I’ve often found that I don’t have much in common with other members of the CF community. Our lived and shared experiences are powerful, but they can only carry a conversation so far if we don’t have other similar interests. When we step away from our treatments and medications, do we have shared hobbies? Do our life beliefs and goals align, or are they so drastically different that it’s uncomfortable to share the same space? 

I am a cynical person at heart. I have a dark sense of humor, a sharp tongue, and a wicked mind, and these personality traits don’t endear me to many people. And in a community that often advocates for only positive vibes, my attitude doesn’t seem welcome.

But I can’t bring myself to be a different person. If I talked about sunshine, roses, and possibilities, I wouldn’t be myself. I don’t always see the beauty in life, but I also don’t have a problem with who I am. At the same time, it makes me acutely aware of my outsider status. 

As with so many other things in cystic fibrosis, there’s no easy answer. I’d like to have more friends to complain to, people who understand what my day-to-day life is like, but I also don’t want to compromise the core of who I am to make those friends.

Feeling like an outsider in the world you’re ostensibly a part of can be incredibly difficult emotionally, but square pegs can’t be forced into round holes. One day maybe I’ll push past my fear of growing close to reach out again. For now, I simply try to speak for people like me and offer a willing and listening ear.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.