Monday, July 2, 2012
Guest Post: Jackie's Story
We're thrilled to be expanding our Guest Post series - and even more excited to have the author and founder of 'Blood, Poop & Tears' writing a post for us!
I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargoned response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I'm really quite eloquent with words.
Ok, Jackie, what's your point?
Well, impatient reader, my point is that you have to think about these things. I have my own mini internal IBD marketing campaign. I have ready responses to common questions, a 30 second mental business card, and loads of facts that I am dying to share with any person at the smallest inkling of their interest on the topics. Sometimes, I bait them. I'll be around a stranger, or someone I know very little and once I see an opening I'm all "I have no colon, I have a jpouch. Wanna know what that is. blah blah blah". See what I did there? I just snuck it right in. I guerrilla IBD fact attacked them.
Or if I'm out to eat with people, I'll throw in some comment about what I can and can't eat with a quickie explanation about how not having a colon can have a serious limitation on the amount of salads and spicy chicken wings you can eat. Why is that, unsuspecting dinner companion? Because I dont have a colon, because I had UC. Oh, and I had an ostomy. Don't know what that is? Well here is a list of ostomy facts, filled with non offensive descriptions, followed up by a list a famous people who had ostomies. That Fred Astaire, what a hunk.
Back to my point. My strategy for raising awareness is facts disguised by jokes. Its the same technique used by parents to get kids to eat vegetables. If you can ease people into a conversation with jokes and even by making yourself the butt of the joke (see butt jokes are fun), then you can sprinkle the conversation with IBD related facts. Thus teaching people, raising awareness and having a good chortle all at the same time. In my experience, chances are, that if you do it right, people will also continue to ask more questions. Which for me, is like IBD advocacy gold. The second the door is open I take that opportunity to shower my question asker with all kinda of information they may or may not have wanted.
Why do I give them info they may not want?
Because we have a disease we don't want. Just hearing about the disease is the least those healthy colons can do for us. Also, frankly, hearing not-so-pleasant details is probably what is going to stick with them and keep IBD in their memories. My goal is not to have a bunch of IBD experts running around, its to have a bunch of people who know what IBD is, and to show them someone who is confident about their disease. Their ass disease to be exact. I want people to see that IBD is a serious disease, but that when we are all educated, we can change perspectives about it and maybe even have a laugh or two.
I probably talk about my butt too much in all honestly. Literally the guy who came to quote a new fence at my house, knew about my jpouch within 10 minutes of meeting me. Was that a little too much? Probably, BUT he then responded how he often has stomach issues too, and through my urging was going to make a doctor's appointment. See people, I'm changing lives one butt conversation at a time. Perhaps I overcompensate with my stories because there are so many people with IBD who are too afraid/embarrassed to talk about their disease. I have been there too. I wasn't always this butt joke wonder that I am today. But I learned how little people know about IBD and I also learned that IBD is a real disease, a real medical problem, and that real people can die from IBD complications. It is important that people of the world understand that we don't just have stomach aches, that we don't have IBS, and that we aren't faking it.
I look at every person I meet as an education opportunity. I wear my "Ask me about my Jpouch" shirt or "Ask me about my colitis" hoodie everywhere and honestly I make sure to wear them when I know I'll be in large crowds. I WANT people to ask me. I want to tell people how bad IBD can be, but to show them that it can get better. I want people to see confident IBD patients and to understand the strength it takes to go through the testing, poking, prodding, medication, and surgeries that go along with IBD.
You may not be comfortable with my tactics. Thats understandable. But if you get anything out of this, I hope that you will understand how important it is to tell your story. There are billions of people on this planet, and each one is an opportunity for advocacy and awareness.