Tag Archives: social media

About IBD Podcast 29 – I’m Sick and Nobody Will Help Me

What have you done when you couldn’t get anyone to take the symptoms of IBD seriously and you found yourself out of options? For Meredith, the road to a Crohn’s disease diagnosis was long and so frustrating that she wound up pleading for help from a specialist she’d never met. Going online to connect with other patients also took Meredith to places both light and dark, and she, Jaime, and I sort through our various experiences with social media as well as how we can work towards creating more hopeful content for new IBD patients in the future.

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Podcast Episode 24 - You Have to Have Joy

About IBD Podcast 24 – You Have to Have Joy With Sara Ringer

With an invisible illness such as IBD, it can be challenging to protect your quality of life. Patient influencers often push themselves in the service of others and that may seem strange to those that follow along on social media. How can someone be so sick and yet be able to attend a medical conference? Sara Ringer of Inflamed and Untamed explains how what you see online can be misleading and how she manages two difficult digestive diseases, all while striving to live a fulfilling life that includes being a resource for other patients seeking information and support.

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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

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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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

Let’s Not Promote Crohn’s Porn

Bar Graph

Is this how we should compare our lives with IBD?
Image © Salman Ali Ehsan

Over the past few months I’ve seen a strange turn in social media, and not one that I’d like to see continue. There are many dedicated IBD advocates on Twitter and Facebook, most of whom are putting their personal stories front and center in order to bring more awareness about IBD. Being open and honest about something so personal as one’s health is courageous, and for the most part, we stand together to help the newly diagnosed and the uninitiated learn more about Crohn’s disease and ulcerative colitis.

However, there is something going on that disturbs me deeply: the “I’m sicker than you” game, or what I’ve come to call “Crohn’s porn.” Continue reading