Tag Archives: sharing your story

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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Episode 26 - Why Didn't I Do This Sooner_

About IBD Podcast 26 – Why Didn’t I Do This Sooner?

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.

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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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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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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 13 – Growing Up IBD with Brian Greenberg

Being diagnosed with IBD as a child presents special challenges for kids and for parents. Learn how Brian Greenberg of Intense Intestines Foundation dealt with a Crohn’s disease diagnosis at a young age and transitioned from being a child reliant on parents to help manage his IBD to learning how to manage it all himself.
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When Miscarriage Happens To You

Girl On A Beach

When is your family “complete”? It’s hard to know what the answer is to that question and in some cases it’s decided for you instead of by you.

Below includes my experience of miscarriage. Please note this includes a frank discussion of pregnancy loss and medical treatment for such, as well as strong language.

I never thought I’d be writing about miscarriage. To tell the truth, I kind of don’t want to do it now. But I’ve come to realize that holding back is harmful to me, and imparts the feeling that my experiences didn’t serve any purpose. Not that everything that happens has a reason or a purpose, but I have the ability to take this part of my life and turn it into something positive.
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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