Friday, April 13, 2012

Can You Hear Me NOW?

If people had thought bubbles above their heads, mine would continuously be advertising, “Hey, have you heard about Inflammatory Bowel Disease? Ask me about it!”. It’s reminiscent of the ‘I have Crohn’s, ask me about it’ face paint I scribbled on my leg at a Heel n’ Wheel or the ‘Ask me about Crohn’s and ostomies!’ poster I have on my dorm door. 

Over the past nine years, I have found it very difficult to get media attention about IBD. I can never quite decipher if people just think it’s gross or not proper conversation, or if they just have no sweet clue of the disease that ravages our guts. But despite my constant shouting about this, I only get the occasional whisper of a response. Before I was headed to Peru, I decided to see if I could get into a news publication at school to promote awareness about bowel disease. I emailed everyone (in bold because it was literally EVERYONE) involved in campus media, and I didn’t get the slightest response. Then I remembered a friend in a class who’s involved with an online media page and thought, good idea, I’ll have an in. She gave me the email for the people in charge, whom I promptly emailed. I waited and waited, and got a simple platitude of a response of, “We’ll consider this and get back to you. Have a good trip.” Only they never got back to me. Upon returning back to school post-Peru, I thought, let’s try this again, now there’s more of a story. Nope. The email response said, “I’m glad you had a good trip.”

Like thanks but no thanks. I’m a student at your school living with a chronic disease who just did a super cool thing with an amazing charity to change the lives of people affected by bowel disease, but it’s not enough.

And yet, this morning as I logged on to my computer, I was nearly infuriated by an article about a student doing the Boston Marathon in memory of an Uncle who had passed away from cancer. And don’t get me wrong - that’s awesome for her and that’s very cool - but why is it more important than my disease? Why does it merit attention and why don’t I?

That sounds childish and whiny, but I mean it in the more general sense of IBD versus all other ‘glamorous’ diseases. I am stomping my feet and shouting, but no one is paying attention. How do we get our cause into the spotlight and help demystify a disease that touches so many people?

It makes me want to walk around campus with a sandwich board sign that reads “HEY I HAVE CROHN’S, IF YOU DON’T KNOW WHAT THAT IS - YOU SHOULD!” or to introduce myself as “Hi I’m Jennie, can I tell you about Crohn’s?” I feel like I’m failing when the awareness around me is limited and I’m not doing a good job at raising the profile.

Ultimately I am not my disease. I am not Crohn’s, I am not an ostomy. A friend of mine and I were talking about this yesterday and she said, “Well, someone who dates you is dating you, not your ostomy bag” and she’s right. But I do consider myself an advocate and feel the burden of ignorance pressing on my shoulders. I will not stop seeking opportunities to educate others and will try my best to remain undeterred by the bumps in the awareness road. 

And perhaps, at the end of the day, it’s not one loud voice that has the power - but all of our little voices culminating in a harmony so that we will be heard, loud and clear.


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