When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.
I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.
It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.
People with IBD and other chronic conditions have questions about receiving the COVID-19 vaccination. Rosanne Mottola works at a hospital and was therefore eligible to receive a vaccination through her employer. Rosanne gives her experiences and takeaways as a “mild to moderate” ulcerative colitis patient and how she made the decision to receive the SARS-CoV-2 vaccine. She gives some great advice about how the internet may skew our perception of what IBD life is like, and because of her experiences and background, she’s a wonderful resource for people living with IBD.
Patient advocacy groups often take part in “Day on the Hill” events. This is when an organization sends a group of people to Washington DC to meet with the offices of federal representatives. I’ve attended several hill day events over the past several years with different patient advocacy groups. At this point, I’m ready to let you know some of my tips and tricks so that when you’re ready to get started and do this work, you’ll be prepared.
This year I attended the annual “Day on the Hill” with the Crohn’s and Colitis Foundation (the Foundation) in Washington, DC. It’s a two-day advocacy event where people who have been touched by inflammatory bowel disease (IBD), either as patients, caregivers, or healthcare professionals, meet with legislators and/or their staff.
That’s the postcard version: but let’s break this down so it makes more sense.
An elevator speech or elevator pitch is a quick summary of a topic that can be given in about under a minute: just enough time to take an elevator ride. It’s usually thought of in a business sense, like a sales pitch or an idea you have that you present to someone in management upon a chance meeting (such as in the elevator). The use has been expanded to mean any prepared and rehearsed speech that you can give quickly on a moment’s notice. The purpose of this article is to guide you on crafting your elevator speech about your inflammatory bowel disease (IBD).
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.
I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed.
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.
When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease.
Those are the facts. Now, for the reality. Continue reading
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.
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.