Tag Archives: advocacy

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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You Get Tired With Shawntel Bethea and Brooke Abbott

Episode 21 – You Get Tired With Shawntel Bethea and Brooke Abbott

The healthcare space isn’t a level playing field. Minority populations face complex challenges when it comes to accessing and receiving care, which is why April is designated as National Minority Health Month. In regards to inflammatory bowel disease, it’s not well known that Crohn’s disease and ulcerative colitis also affect minorities. Shawntel Bethea of Chronically Strong and Brooke Abbott of The Crazy Creole Mommy Chronicles discuss how they’ve been affected by healthcare disparity and offer concrete ideas on what can be done to start addressing healthcare gaps in their communities.

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April IBD Moms Twitter Chat

April IBD Moms Twitter Chat: Planning Your Family

What’s a Twitter Chat?

A Twitter chat is a way for Twitter users to gather together at the same time and talk about a particular topic. In this case, we’re moms who have IBD and we want to discuss options for family planning such as in-vitro fertilization, adoption, and surrogacy. By searching for, or clicking on, the hashtag, #IBDMoms, you can follow along with all the posts using that tag. In this way, you can see the conversation and also take part. Continue reading

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

About IBD Podcast 19 – Amber Answers the IBD Advocacy Tag Questions

Megan Johnson of The Front Butt YouTuber has presented 5 questions for people with IBD to answer and then tag someone else using #IBDAdvocacyTag. It’s a great way to get to know people in the community better and hear different perspectives. My answer to the form of IBD I have is not going to be what you expect and my socially awkward moment is pretty epic: I remember every detail about it, even though it happened almost two decades ago. And who did I tag? Well, I do that in my own way, too.
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We Are Not Unique With Christy Stone of Crohnie Bologna

Episode 16 – We Are Not Unique With Christy Stone of Crohnie Bologna

Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.

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About IBD Episode 4 – Ryan Stevens – Crohn’s Guy

What’s it like to be a competitive swimmer and one day develop Crohn’s disease? Well, you don’t stop swimming! Hear Ryan Stevens, Crohn’s Guy, talk about the work he’s doing to raise awareness of IBD.

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About IBD Podcast 9 – Why Are You Grateful For Your IBD?

If I asked you what about your IBD you were grateful for, what would you say? This is exactly what I asked IBD Advocates, and their answers are as complex, rich, and varied as they are. As you listen to their responses, you will undoubtedly find yourself nodding in agreement with some ideas and seeing your life from a different perspective with others. I hope this episode is as fulfilling for you to listen to as it was for me to produce. Continue reading

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