Tag Archives: sharing your story

Consider These Points Before Sharing Your Story

Before You Share Your Story

As people with inflammatory bowel disease (IBD), it is important that we share our stories. We need to share in order to bring awareness of our disease amongst the public but also to other people who live with the disease. IBD is isolating but there is a thriving community that’s willing to share information and support in order to prevent anyone from feeling alone in their disease.

However. I have concerns.
Continue reading

About IBD Episode 35 - It's a Pain I Invite Into My Life

About IBD Podcast 35 – It’s a Pain I Invite Into My Life

A diagnosis of IBD can take away the thing that you feel defines you as a person. This is how it felt for Megan Starshak of The Great Bowel Movement, who describes how her ulcerative colitis diagnosis at age 18 stole her passion for running. The process of losing and then regaining her identity as a runner fueled her desire to help people live well with a diagnosis of IBD. Her foundation seeks to educate those outside the IBD community through the use of a simple conversation prompt: Ask Me About My IBD.
Continue reading

It's Important to Share Your Stories

About IBD Podcast 33 – It’s Important to Share Your Stories

Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours.

Continue reading

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.

Continue reading

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.

Continue reading

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.

Continue reading

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!
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.
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.
Continue reading