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.
Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials.
Podcasting is not my job. I’m fortunate enough that I can indulge in something that feeds my soul because I am paid for writing and for consulting (both inside the IBD space and outside of it). There’s no money in podcasting for me as of this writing. I don’t have sponsors and I don’t do it on behalf of someone else. I do it because I had an idea and I wanted to explore it. I gathered my support network around me and I jumped right in with both feet.
What happens when a diagnosis of Crohn’s disease stands between you and your chosen career? This is exactly the barrier that veteran journalist and news anchor Natalie Hayden faced in the early days after her IBD diagnosis. Her decision was to gather her support system around her and get camera ready. Find out how she made it as a morning news anchor, found the love of her life, started her family, and founded Lights, Camera, Crohn’s.
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.
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
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.
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.
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