Shake Off the Hate!

Crohnically Ill

Post ALS ice bucket challenge, as post anything mainstream media, there is quite the back lash. image

“We are wasting clean water.”

“Not enough people suffer from ALS.”

“People don’t even know what ALS is.”

Well this ruffles my feathers, and this is just the beginning. I’ve been promoting #GetYourBellyOut, an awareness and fundraising campaign for IBD, which I suffer from. I posted about this in the comments of a friend’s page, who happened to be complaining about the ice bucket challenge. A third party got on and asked me questions about IBD, and I responded. To which, my supposed “friend,” replied on his feed (bleeping out the language)

“How about just %#^#*ing pay attention and donate instead of #^#*#*ing have the media involved? I’m sick of this {%^*. If I had cancer I wouldn’t want people donating cause of media just me this is #%#^}*{*. IF YOU DON’T LIKE IT STAY OFF MY #%{^{*ING PAGE!!!”

I kid you not. Still not done. Another person, in reference to ALS, says:

“There are WAY more life threatening and cultural issues going on in this world than #^}*}*ing ALS. Seriously, omg…Cry me a river. There are MILLIONS without clean water or food every second in this world. There are entire villages and religious groups being slaughtered globally, and you want  to talk about a disease that affects 5-6K people a year?”

Wow. Are you kidding me?

Why all the hate? One thing at a time here.

To the first “friend” saying if he had cancer blah blah blah. It’s oh so easy to throw that around. No, you don’t know what it’s like to live with an illness that affects you daily and has almost killed you multiple times. If you did you would want plenty of awareness and research occurring to help produce more effective medicines and even a cure. Really? Upset because I’m discussing it on your page? Aren’t there worse things we could be talking about? And I’m sorry what better way is there to raise awareness besides media?

To the second, here’s my issue. One problem is more important because it affects more people? What if that issue affected you? Would it still be less important because it affects less of the population? And again, you are PISSED BECAUSE PEOPLE ARE DOING SOMETHING FOR A GOOD CAUSE?! We aren’t talking about Kim Kardashian’s clothes. We aren’t sharing the latest Miley video. We are talking about something, for once, worthwhile. Can we pick up on this trend and spread it to other issues that maybe I dunno affect more people? Let’s use some creativity. I’m no idiot. I know there are “worse” problems in the world. I get it. But at least the media is starting to take notice. No not the news- I mean social media is taking notice.

What do people check more in a day? CNN, Facebook, Twitter, or Instagram? Bet you the last three get logged the most time. And those ice bucket challenge videos are all over them. Shouldn’t we be wiping our foreheads in relief that people want to talk about and do something positive instead of setting themselves on fire? Of course there are people doing the challenge clueless as to what ALS is. That’s bound to happen. Yes not all organizations put enough of the donations to research. Of course it’s wasting water. Do like Matt Damon and pour toilet water on yourself. He still supports ALS AND makes his point known about clean water. He doesn’t hate.

Do you want people talking about something other than ALS that’s important to YOU? Get creative! Do something!

I want people to know about IBD so they can be understanding of this disability just like we expect people to be understanding of anything else. This is an invisible disease. One glance at me and you wouldn’t understand why I’m begging to cut in line at the restroom, or why I’m using a wheelchair through Walmart. No not everyone dies from Crohn’s. But some do. And those of us lucky enough to live with it don’t lead normal lives even though WebMD would have you believe it’s a cake walk.

ALS is a terrible terminal illness. My friend watched her mother slowly pass from it, and this was devastating for her family. I’m not going to tell her or the 6K patients/families affected “cry me a river.” They aren’t less worthy of our attention and donations because they are fewer in number.

I get it. We can’t all jump on every band wagon that passes by, and there are some bigger band wagons than others. My point is shouldn’t we be happy that people, in general, are finally taking notice of the band wagons to begin with? The ice bucket challenge was genius. Let’s be thankful that for once, a terminal illness is trending along with Iggy’s beats. It may not be the step you want, but it’s a step in the right direction. Shake off that negativity.

Finally, in the words of Don Draper, “If you don’t like what’s being said, change the conversation.” Change it to something that is important to you, but subtract the negative attitude, or no one will listen.


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