Category Archives: Advocacy

Vote In Real Elections

Vote In Real Elections, Not Online Ones

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 may 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

About IBD Podcast Episode 10 With Brooke Abbott

About IBD Podcast 10 – Advocacy With Brooke Abbott

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!
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World IBD Day Isn't For You

Why World IBD Day Isn’t For You

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.

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It's OK If You Haven't Found Your Voice Yet

It’s OK If You Haven’t Found Your Voice Yet

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

Walking In Their Shoes, And In Mine

In Their Shoes

The avatar for the program is customizable (it looks like me, right?) and it changes based on the challenges. Feeling poorly (looking green), sweating (experiencing a sign or symptom), and blushing (feeling embarrassment) are all situations that are experienced during the simulation

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.

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What It Means To Be #IBDvisible

Puzzle

Is there always a piece of you that’s missing? Maybe a piece of information that you leave out when you meet new people. Do you keep your IBD secret because you might open yourself to problems at school or work?
Image © Pawe³ Windys http://www.freeimages.com/photographer/windys-39131

People sometimes tell me, “Oh, I’ve read your blog.” It’s often said almost sheepishly, as though it were something that were slightly distasteful or embarrassing. It does seem to take a little courage for people to tell me this, which also leads me to believe for every person who tells me this, there are others who are reading and yet never say anything.

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.
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My Spectacular Advocacy Fail

Do you ever feel like the one that sticks out? I do, frequently. I've done my best to make the most of bad situations, but when it's my child that is the one who "sticks out," I don't always react in the most rational, thought-out way.

Do you ever feel like the on that sticks out? I do, frequently. I’ve done my best to make the most of bad situations, but when it’s my child that is the one who “sticks out,” I don’t always react in the most rational, thought-out way.

A man approached me at an event, not an IBD-related one, and asked me what everyone was doing. The event was a walk at a local beach and it happened to be for food allergy awareness.

“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

Why You Can’t Trust “Dr Google”

This is what Dr Google gave me when I searched for “Crohn’s disease.” I made a few edits because I don’t quite think this information is up-to-date. If I were contracted to edit this, and receiving payment for my time, I would send it back with a complete rewrite and a suggestion that the author was not qualified to write on the topic.

Screen Shot

This is what searching Google for Crohn’s disease gives you. It doesn’t exactly inspire confidence, does it?

What’s Your Trust Setting?

Cooper: “TARS, what’s your honesty parameter?
TARS: “90%”
Cooper: “90%?”
TARS: “Absolute honesty isn’t always the most diplomatic, nor the safest, form of communication with emotional beings.”

Interstellar

Interstellar has become one of my favorite movies. Don’t let the science fiction part of it get in your way — it’s not about that. It’s about what it means to be human and how to distinguish between saving individuals and saving humanity as a species.

Having a chronic illness is rather like having a secret. How do you go about telling people of your illness? Do you tell them at all?

I saw a posting in a closed IBD group recently where a member was asking for help in how to request accomodations at work without having to get specific about health circumstances. Advice was offered on how to handle the situation discreetly, until another member demanded that the advice seeker should “tell the truth.” “Why would you lie?” the response continued.

Not revealing the whole truth is not the same thing as lying. I was concerned about the helpfulness of this exchange, and I failed to see how it was productive for anyone. I don’t believe any person has the right to question another person’s decision to not disclose a health situation. We don’t owe each other the truth. Continue reading

About IBD Gets The BioExperience

“Can you see anything?” asked Lord Carnarvon.
“Yes, wonderful things,” replied Howard Carter, upon seeing King Tutankhamun’s tomb for the first time

On February 26, 2016, I attended an event at the Janssen Biotech facilities in Pennsylvania called The BioExperience. (Janssen is the company that makes IBD medication Remicade.) BioExperience. It sounds like a ride at Disney Epcot: exciting and full of potential. And actually it really was just that. Exciting and informative and something that I would never get anywhere else. I want to tell you a little about what this event was all about.

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