For this first episode of my limited series, Summer of Activism, I’m answering a question that I hear regularly: how it is that I go to medical meetings such as Digestive Disease Week, Advances in IBD, or Crohn’s and Colitis Congress. I give you the answer as well as tips on how patients, bloggers, podcasters, and vloggers can work towards attending these, and other, scientific meetings. Here’s a spoiler: it takes dedication to improving the lives of people with IBD, commitment to doing the work consistently, and some professional networking.
This year I attended the annual “Day on the Hill” with the Crohn’s and Colitis Foundation (the Foundation) in Washington, DC. It’s a two-day advocacy event where people who have been touched by inflammatory bowel disease (IBD), either as patients, caregivers, or healthcare professionals, meet with legislators and/or their staff.
That’s the postcard version: but let’s break this down so it makes more sense.
An elevator speech or elevator pitch is a quick summary of a topic that can be given in about under a minute: just enough time to take an elevator ride. It’s usually thought of in a business sense, like a sales pitch or an idea you have that you present to someone in management upon a chance meeting (such as in the elevator). The use has been expanded to mean any prepared and rehearsed speech that you can give quickly on a moment’s notice. The purpose of this article is to guide you on crafting your elevator speech about your inflammatory bowel disease (IBD).
You’ve seen the posts: “Click like” or “Retweet” to vote! An interaction with a post is a “vote” and after a certain amount of time the “votes” are tallied and a winner is declared. Magazines might use this type of crowdsourcing to decide their “best restaurants” or a photography web site may use it to choose a “cutest baby” photo.
I’ve been online, running web sites for myself and for others, since 1996 and this type of popularity contest is nothing new. It’s never going to go away because it’s inherent in our culture. It might be something we have to accept, up to a point. However, I take issue with using this type of “voting” for where we are now: choosing a “best” person from the online chronic illness community. Continue reading
Are you ready to tell your story? Your legislators in Washington D.C., in your state, and your home town want to hear from you about how IBD has affected your life and the legislation you care about. Brooke Abbott of The Crazy Creole Mommy Chronicles and Amber tell you how to get started in health activism and how to make your voice heard in our government!
If you have inflammatory bowel disease (IBD), or you love someone who does, you don’t need an awareness day to tell you the impact it has on your daily life. People living with Crohn’s disease or ulcerative colitis and their caregivers already have a vast education on IBD that can only be gained through experience. World IBD Day isn’t really for you.
When I still had my colon, I was at the pharmacy on a regular basis. Like most people with IBD (ulcerative colitis, specifically), I was always taking several medications in an effort to keep the inflammation down. I also usually needed over-the-counter things as well — witch hazel and wipes and antacids.
Once when I was in my mid-twenties, the young man behind the pharmacy counter tried to talk to me about my prescriptions. He then questioned my use of that particular location of the pharmacy.
“You know,” he said to me, “there’s a store in [town that I lived in] that’s closer to you.”
We have slang now to describe what this man was doing to me. He was mansplaining it to me. For some reason he thought he knew better. Continue reading
Takeda Pharmaceutical Company contacted me and offered me the opportunity to participate in a program that they’d developed which simulates the experience of having inflammatory bowel disease (IBD). The program was being used internally to help Takeda employees understand IBD better and was now being rolled out to participants outside the company. IBD is an exceptionally isolating disease and research shows that it is associated with a high degree of stigma in the public perception.
I was immediately intrigued with the prospect of this program: my first thought was that I couldn’t imagine what this might look like. My second thought was that it sounded like an innovation that could change how participants view IBD and impact their work as health care professionals, industry representatives, and legislators. The program is called “In Their Shoes,” and the full session takes 2 days, but I participated in an abbreviated, 3-hour variant.
For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
“This is a walk to raise funds and awareness of food allergy.”
“That’s strange,” he said to me, and made a face of disbelief.
“Why is that strange?” I said.
“Because you think it would be cancer or Alzheimer’s or something.” Continue reading