Wednesday, June 1, 2016

A Slap In The Face from Entertainment Weekly

After posting about my distaste for social media and explaining that the only social media I'm involved in is Instagram and this blog, I think the Instagram may also have to go.  Simply because there is no reason I would ever want to come across something as disgusting, appalling and just downright rude as what I saw this weekend!

Scrolling through my daily dose of baby animal pictures and motivational sayings I saw this post from CCFA.  This picture, taken from Entertainment Weekly Magazine's special double summer issue, is nothing more than a slap in the face to the whole IBD community. 

Where to begin...

First off World IBD Day isn't on May 23, it's on May 19.  That in and of itself is an insult because if you are going to make fun of something at least get your facts straight.  (Fun Fact: May 23 is actually Lucky Penny Day.  Don't think anyone would be offended if that day was substituted for World Crohn's and Colitis Day in this "joke".)

Second, whose joke is this?  Entertainment Weekly's, Beyonce's or Minnesota's?  Who actually is the one trying to make a joke about World Crohn's and Colitis Day? Which misinformed source is trying to say it's the "Joke of the Week"? I don't read this particular magazine, however I'm thinking the blame falls on Entertainment Weekly.  Minnesota is just a state trying to pay homage to a celebrity for some reason I really don't care about.  Beyonce is just a celebrity who will be put in the news at the whim of the paparazzi for no other reason than the fact that she's famous.  Entertainment Weekly, however, is a magazine that is supposed to have writers and editors and fact checkers and I really just want to scream,  "WHAT THE HELL WERE YOU THINKING?!"

Third, take that?  TAKE THAT?  Really?  This is how Entertainment Weekly chooses to word this?  Why would anyone deliberately try to oust a disease?  Why would that be funny?  How does Beyonce being recognized by the state of Minnesota in any way relate to or have anything to do with Crohn's and Colitis?  It doesn't. It just doesn't.  It almost seems as if this slam was deliberate.  Why?

So many comments flew around on Instagram (and I can only assume Facebook, Twitter and the like - though I did read that Entertainment Weekly shut down the comments section on Facebook but I personally don't know that to be true) and most of them stated two main things.  1.  No one would ever think to make fun of 'popular' diseases like Cancer, Diabetes, or ALS.  2.  Crohn's Disease and Ulcerative Colitis are not a joke.

People know about Cancer - every form of Cancer.  People know about Diabetes.  Celebrities come out of the woodwork to advocate for these conditions and many others.  But Crohn's Disease and Ulcerative Colitis are not well known; to the general public or to Hollywood.  I think maybe Shannen Doherty may (or may not) have Crohn's Disease though she won't publicly acknowledge anything about it.  She was quoted once saying it wasn't "sexy".  Mike McCready of Pearl Jam does have Crohn's Disease and he does a lot of advocacy work to raise awareness of IBD, however if you don't follow this type of music chances are you aren't going to know who he even is.  Those of us in the IBD community don't have a super popular celebrity endorsement for our disease.  We are nameless, faceless warriors who fight for our lives every day behind closed doors - literally.  Those who have feeding tubes, ostomies, surgery after surgery, complications, pain and more.  The endless medical debt.  The endless trips back and forth to doctors and hospitals.  We lose friends, relationships, jobs and even family because of our diseases.   We even lose ourselves.  But we do have a voice.  A small little voice screaming from an Instagram post and a little blog with 136 followers.  That little voice is saying, "Hey! I'm here, Entertainment Weekly, and what you did to make fun of us was wrong!"

I joke about my condition.  I joke about pooping.  I have funny pictures on the side of this blog and laughing is a healthy coping mechanism when dealing with the harsh realities of living with a chronic illness.  However, this joke was done in very poor taste.  It was done in a way that was hurtful and makes it seem like a day about a celebrity who has it all - money, fame, beauty and most importantly her health - is much more important and should be celebrated and acknowledged over a day to build awareness and recognition about Inflammatory Bowel Disease.  God forbid Entertainment Weekly use their powers for good to help people understand what IBD actually is and how it effects people's lives.  That would be informative and tasteful journalism though - obviously way too much to ask from anyone in 'the business'. 

Entertainment Weekly's website says "Smart. Funny. First."  They were none of these things when it came to this. At least Entertainment Weekly did do one thing I can't be pissed about - they spelled Crohn's correctly.


christy cowart said...

I think your awesome and so are your post my 15 year old son has Crohns disease and has been hospitalized 4 times within this past year reading post gives me insight to what might be going on in his head and the way he feels I just want to say thank you for that

Jenni's Guts said...

I'm so sorry to hear about your son and his hospitalizations. I hope things start turning around for him. I'm glad to hear that you are enjoying the blog. I hope I haven't scared you too much. I know sometimes I can be a little dark. Good luck to you and your son and thank you for reading! `Jenni

Shannon Steele said...

I, like you, have a wonderful dose of crappy immune system. Chron's as well. I've deleted all social media, it's became too fake for me. I was getting tired of constantly getting tagged in stories about my disease. The margin between being a patient and person was becoming too blurred. As I'm sure you too have experienced. I have toyed with the idea of starting a blog but if I did I'd never be as brave as others and show my face. I did that once and the fallout was pretty harsh. Sometimes my darkness seems to cloud everything else about me out. I applaud your ability to not hide behind a mask. I wish I had your courage, but knowing our path is being brought to light by you and brave others, allows us not yet ready to drop the curtain, find some peace. While I'm only in my 30s, I often wonder if there will ever be a time when this shame causing, pain inflicting, life long battle will ever be understood. With your voice, and the countless others, I think there may be a day when this infliction will be a blip on the radar of human illnesses and diseases.

Jenni's Guts said...

Thank you Shannon, for your kind words. Please don't be ashamed or embarrassed about your disease or anything else. As I am trying to learn (I have a thick head so it's hard) it's not your fault. You didn't ask for this and you have nothing to be ashamed of. The fault is with others and how they respond to our illness(es). Stay strong!! `Jenni

Louann Carroll said...

Good grief this offends me. I have friends in the entertainment community. I can't believe this happened.