The online CF community needs to rein in distasteful jokes
When humor becomes hurtful, it's time to stop
As a former stand-up comedian, I’ve heard jokes about every topic under the sun, from Tinder to kitchen appliances, to every dark and demented aspect of human life. I’ve also made jokes about my battle with cystic fibrosis (CF), and I make no apologies for it. It was therapeutic.
There are two ways for a comedian and a joke to get better: by performing the joke, of course, but also by recording yourself to listen to the delivery and the audience’s reaction. Sometimes I’d tell a joke I thought was funny but would realize later that the audience didn’t get it or they were too uncomfortable to laugh. That required a rewrite.
As a community, it’s time for those of us with CF to take a step back and listen to, or read, what we’re saying.
Case in point
When I joined the larger online CF community a few years ago, I enjoyed the many jokes and memes circulating in our support groups. There’s nothing wrong with laughing at yourself or along with others about your battles with CF. The disease can be pretty gross at times.
However, I’ve noticed that not only are the jokes getting darker to the point that they’re unfunny, they’re also being aimed outward. I see an increasing tendency to being crude and hurtful, and there doesn’t seem to be a purpose beyond lashing out.
In one of the CF Facebook groups I’ve joined, members post images of deceased celebrities, saying they died of CF or are battling it and are a hero. None of those random celebrities actually had CF.
To me, it’s lazy and low-grade humor that’s not even funny. If the wrong person reads and believes it, then it’s a lie, and for what? The sake of shock value or making others feel foolish for sympathizing or feeling inspired?
It’s one thing to joke about death and your own situation, but it’s tasteless to do it at the expense of others who are already hurting.
I’ve seen a few other posts from people with CF critiquing parents who have more children after they’ve had one with CF. (If you’ve had one child with CF, there are considerable odds that your next children could also be born with it.) These biting critiques are done through the disguise of “jokes” and poor attempts at edginess.
I don’t find them funny. While I do understand the ultimate point trying to be made, to say these parents belong in jail or hell is grotesque. I can’t imagine the despair of being a parent and seeing posts saying that people like them should be dead because they had multiple children with CF, especially if they joined the group for emotional support. (To learn more about this sensitive debate, CF News Today published a column about it from the perspective of someone who has CF and watched his sister also battle the disease.)
We must be more empathetic in what we say and what we joke about. We need to be better.
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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Anthony M Palmiero
Good job Will. Love you
Helen Palmiero
I shouldn't be shocked but I am. I guess I just push all, mean, cruel things to the back recesses of my mind and try to forget they exist. It's said that kids (elementary school) can be cruel. I wish they would grow out of it. I wish adults wouldn't let these opinions fester in their minds. I wish teens and others in developmental stages would open their minds to the better, nicer ways of life. I wish, I wish... We'll just keep our heads held high & ignore whatever we can -and maybe even protest in writing if it gets to be too much, I don't know. I do know, however, that your columns always teach me something. Keep up the good work! Love you.
Joanne Schum
William, thank you for expressing your view on some of the Facebook groups that Cystic Fibrosis patients partake in. I too find some of them to be crude, hurtful and leave me wondering, "why would anyone write these things." I think I may of questioned someone who posted such a comment in a CF group and what I got was a most likely sarcastic reply. Something like, "loosen up, we all love to have fun in this group, if you are so stiff, then leave." Some groups will also claim they are NOT A SUPPORT group, if a member complains about the content. My mind says, "then what exactly are you doing if not a support group?" People join believing it is a support group, and for them I want to say, "I am so sorry you joined this group." So am I an old fuddy, duddy? Maybe I am. I just turned 60, I have cystic fibrosis, I received a double lung transplant 25 years ago, and I have a very active, busy, Facebook group for those who are pre and post lung transplant, due to a variety of lung illnesses. We have strict rules for the group, and myself and the other two ADMIN's are very present in the group to be sure that people are following the rules. I have found if you have a group with guidelines/rules that are common sense, that the group gets a reputation that "this is the best lung transplant group on Facebook." I am thrilled when someone joining says their lung transplant team at their lung transplant center recommended the group to them, because of the rules. ex: no profanity of any kind, no text typing-spell words out, no ADS, no fund raising for an individual or organization, topics are only lung transplant related., etc. We don't "chit-chat" on topics that don't pertain to lung transplant - but I recommend becoming real friends with others in the group. That is easy to do when you find someone that might go to your lung transplant center; or someone has your lung illness. I have made some wonderful friends and have met many of the members of the group. I digress, Facebook is a great form of support, caring, learning, sharing and making friends, but sorting through the groups is a must and you can complain about the group, to the ADMIN's if you like, but most likely they are not changing. They got a following that joins in with the same. So search for another group that fits your needs. Or, the other idea, start a group with your rules and guidelines. Thanks again William.