Category Archives: Advocacy

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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The Best Tweets From The IBDSC Twitter Chat: Pregnancy, Birthing, and Parenting With IBD

On March 9th, the IBD Social Circle held a Twitter chat to discuss pregnancy, birthing, and parenting as an IBD patient. I was the host, and Stephanie Hughes of The Stolen Colon was my co-host. Our featured gastroenterologist was Dr Edward Loftus, Jr of Mayo Clinic. It was a lively chat with lots of great information that I don’t want anyone to miss! Here are some of the best Tweets from the chat!
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What Does It Mean To Be An Advocate?

What is advocacy in the inflammatory bowel disease (IBD) community? Even advocates don’t agree on exactly what this means, maybe because we all advocate in our own unique way.

Newseum

Myself, Kelly Crabb, and Brooke Abbott at the Premiere of Ryan Stevens’ movie about his swim across Lake Erie, Courage and Crohn’s.

My advocacy started in 2000, shortly after undergoing j-pouch surgery, when I began writing the IBD topic site for About.com. The site has undergone several changes over the years, but what I’ve consistently tried to do is to provide quality, accurate information about IBD that anyone can access, for free. The site has been amazingly successful, and it has been rewarding for me both personally and professionally.
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Sam And Frodo And The Importance Of Support

“It would be the death of you to come with me, Sam,” said Frodo, “and I could not have borne that.”
“Not as certain as being left behind,” said Sam.
“But I am going to Mordor.”
“I know that well enough, Mr. Frodo. Of course you are. And I’m coming with you.”
― J.R.R. TolkienThe Fellowship of the Ring

Frodo, Sam, Gollum in Emyn Muil

Frodo, Sam, and Gollum (who was also suffering from being under the spell of The One Ring) in Emyn Muil, on their way to Mount Doom to destroy the ring in the fires there.
© Tomasz Steifer, Gdansk, under the Creative Commons Attribution 2.5 Generic license.

Do you feel supported in your daily life, as you navigate your way through your diagnosis of IBD? Support can come in many forms, and you probably have several sources of support, but I think it’s probably rather rare to feel supported all the time.

In The Lord Of The Rings, Frodo the Hobbit is charged with carrying The One Ring. The One Ring, which looks like a simple gold ring, is infused with evil power, and it poisons Frodo in body, mind, and spirit. Frodo’s friend and companion is Samwise, who travels with Frodo to destroy The One Ring before it can fall into the wrong hands. Frodo becomes increasingly unstable during their journey — obsessed with The Ring and, in the end, unable to even walk. Sam carries him. Continue reading

My IBD Guilt

I’m not exactly sure what to call this feeling, so for a lack of a better phrase, I’m calling it “IBD survivor’s guilt.” This is not to take away from people who have lived through an actual horrific event, and have true survivor’s guilt. This is clearly not even close to being the same thing. But I think I’m probably not alone in this yet-unnamed feeling in the IBD community.

word cloud

How do we cope with this grief? I don’t have any great answers. I just deal with it like I do any other emotion connected to IBD.

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There Are No Pictures Of Me

Amber as a baby

Aww. I’m a baby. Why am I holding a football? No idea. This would have been mid-70s, as evidenced by the green velour couch. It was a super comfortable couch, let me tell you. Great for building forts, too.

At the risk of sounding aged and out-of-touch, daily life was much different when I was diagnosed and even 10 years later when I had my j-pouch surgeries. No smart phones. No Internet. No digital photos. Most people didn’t have computers. A lot of people didn’t own cameras.

This is why there are no pictures of me. There are no photos of me battling ulcerative colitis in my hospital bed. No photos of my stoma. My wasted, 89 pound body. The skin peeling off the bottom of my feet. The blood transfusion. The voluminous amounts of gelatin I ate when my body could tolerate nothing else. There are no images of these things. We didn’t take pictures of them, and truthfully I can’t even remember if I owned a camera, or if anyone in my family did. Continue reading