Building a Better Online Community

These days when I post in any CF group, I read my posts several times over, making sure that I'm not incentivizing bullies to jump all over them. It's a shame that I have to waste hours each week concerning myself with how someone will interpret something I write.

| 4 min read
Andy Lipman

You would think that those of us with cystic fibrosis would have an easy time not sweating the small stuff, because we deal with so much more on a daily basis than those who don't have this disease. You would also think that having CF would make us feel like a tight-knit community. But often times, just like the world we live in, that community is loaded with guilt, anger and blame. I speak from experience. 

In my early 20s, I joined my first CF list serve. I was naïve then and believed that everyone got along and positive stories would result in congratulatory notes. Boy, was I in for a rude awakening. When I proudly posted on the list about my increase in lung function, other patients promptly responded that “arrogance wasn't welcomed on this site.” And when I was upset because my lung function had dropped 10 percentage points, I was told that I was “fortunate” my breathing was as good as it was. “Others are suffering far worse than you,” I was told. One person even mentioned that she had two relatives who died from the disease, so who was I to complain about 10 “stupid” percentage points. 

Social media has become a breeding ground for bullies. These days when I post in any CF group, I read my posts several times over, making sure that I'm not incentivizing bullies to jump all over them. In fact, I'm doing that with this very blog post. It's a shame that I have to waste hours each week concerning myself with how someone I don't even know is going to interpret what I write. How does tearing each other down do anything positive for our community? This is the small stuff, people. That time would be better spent doing treatments or working out.

Folks, when it comes to doctor's appointments, it's about lung function. But when it comes to trying to fight day after day with this disease, it's about “life” function. It's difficult enough living with this disease without adding the burden of getting hate mail because we say something that someone else doesn't necessarily agree with. All we are doing is causing more divisions in our already small community. We are all different, so why not embrace our differences? If we were all the same, the world would be a very boring place.

I've read posts on Facebook meant to throw some comedy on the circumstance of having cystic fibrosis, and I'm not in the least bothered by them. We all need to latch onto our senses of humor from time to time. I understand that some will laugh and some will not. My main concern is why someone who is offended by the verbiage would have to write back to hundreds of people saying that this post is “garbage.” Heck, the post wasn't even directed at them in the first place. Why can't people just delete things or withhold from commenting? Many people might argue that these posts could be considered bullying because it offended them. Truth be told, this is “reverse bullying.” You take a post not directed at you and you end up bullying that person for his or her views. 

I know several people with CF who are often offended by the terms “CFers” or “CF patients.” I believe we need to look more at the intent of people using these words. Are these people trying to offend us? If the answer is no, either ignore them or send a simple private note saying, “I prefer 'person with CF' to 'CFer.' What do you think?” Let's start a dialogue! 

Let's vow to finally stop fighting each other and focus instead on fighting this disease. Together, let's rebuild our community and become an unstoppable team.

Live your dreams and love your life.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Born in Atlanta, Andy spent most of his young life unaware that the disease he inherited was the same one that took the life of his older sister. Upon finding out, Andy decided to raise awareness in her memory through an annual fundraiser Wish for Wendy, which has raised $2.7 million to date for the CF Foundation, his three books about life with cystic fibrosis and his efforts as a motivational speaker. In 2016, he accepted the Foundation's Alex Award in memory of his hero, Alex Deford.

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