Becoming a Patient Advocate for Inflammatory Bowel Disease: 3 Patient Leaders Share Their Advice
Want to make a difference in the IBD world? Here's how to get startedby Mandy Patterson Patient Expert
Are you considering becoming an advocate for inflammatory bowel disease (IBD), but aren’t sure how to get started? Maybe you don’t know what advocacy looks like, but you want to contribute to the larger IBD conversation.
HealthCentral spoke with some of the leading advocates in the IBD world to share more about their stories and get their tips on how to become an advocate.
Alicia Aiello, president of Girls With Guts
Who she is: Alicia Aiello is the current president of Girls With Guts. Alicia has been an IBD advocate for eight years and served on the Board of Directors for GWG for the past 5 years.
In 2004, Alicia was diagnosed with ulcerative colitis (UC), and then she was diagnosed with Crohn’s disease in 2012 after experiencing complications with her J-pouch.
How she became an advocate: Alicia didn’t set out with the intention of becoming an IBD advocate.
“Honestly, I sort of fell into it by being open and sharing my story,” she says. “I was diagnosed the summer before I entered high school and started high school late because of it.”
There was interest at school about why she was “out sick,” so Alicia decided to be transparent. She would show other students her ostomy bag and talk about her experiences. “Those years of high school primed me for advocacy,” she says.
Her advocacy goals: Her goals now are to continue to increase awareness and connect women with IBD.
Her advice on becoming advocate: Be open about your experience with Crohn’s or UC. Write blog posts, share on social media, or even start a vlog channel on YouTube.
“I often receive private messages with women asking me questions, and I try and turn something negative that happened to me into a chance to potentially prevent them from having the same experience,” Alicia says.
But it’s important to remember yourself, too. People depend on Alicia for information, strength, and guidance all the time, but she also has to make time for her own needs.
“Living with IBD is challenging on its own, so you have to find a balance between caring for yourself and others,” she says.
Brian Greenberg, founder of Intense Intestines and Chronically Better You
Who he is: Brian Greenberg is a writer and social ambassador for HealthCentral. Brian has been an IBD advocate for seven years.
Why he became an advocate: Brian was diagnosed with Crohn’s disease in 1993 when he was only 11 years old. After major flares and multiple surgeries, he knew he had a story that could help others.
“I began to know I had purpose, even when I was sick,” Brian says. “If I could help just one person try to do a little more with their disease, I thought it would be worth it. I wanted to set out with a mission to help others. That was my ‘why’ every day.”
His advocacy goals: Right now, Brian is focusing on inspiring others to do more than they think they can with IBD, and he wants to raise awareness that IBD isn’t just a bathroom disease.
His advice on becoming an advocate: Try to find your niche and have fun supporting those people. For example, Brian found a passion for helping patients with their medical bills in the IBD community. He also helps people with IBD realize their dreams.
If you’re struggling with advocacy, Brian offers some wisdom: “There are certain patients in every community who will only want awareness raised in the fashion they see fit. Don't let this get you down. There is a place for all advocacy.”
Andrea Meyer, co-founder of The Great Bowel Movement
Who she is: Andrea Meyer, who was diagnosed with Crohn’s in 2000, is the co-founder of The Great Bowel Movement. She has been an IBD advocate for more than 10 years.
Why she became an advocate: Andrea’s advocacy journey began after her first surgery in the spring of 2008. Her experience inspired her to find a way to help others in a way that hadn’t been available for her.
She started The Great Bowel Movement alongside Megan Starshak to give people an easy way to start the conversation about IBD.
“I didn’t pointedly start out as an advocate. I was just passionate about sharing my story and helping others share theirs,” she says. Since then, she’s spoken at conferences all around the United States and has worked alongside the pharmaceutical industry for short projects for patients.
Her advice on becoming an advocate: “I would encourage them to take the time to really learn how they think they can best help or what they can bring to the advocacy world. I would point them to the [organizations like the Crohn’s and Colitis Foundation] and the internet in general to observe existing outlets and to encourage them to come up with others.”
For Andrea, the most rewarding thing about being an IBD advocate is being able to give a sense of hope to someone who might need it at that moment. In her advocacy, she hopes to continue to help others in a way that’s mutually beneficial.
She also echoes Alicia’s sentiments on avoiding “burnout” when you’re advocating. When you’re chronically ill, Andrea says, helping others can quite easily overtake your life, so schedule some you time to avoid the burnout.
Start your advocacy journey
All in all, advocacy can be a great way to help share your story and inspire others. IBD can be a debilitating disease, and many patients need their voices heard.
But you don’t have to become the president of a non-profit or create your own company to be an advocate. Simply speaking out about your story and sharing it with others is a powerful way to get started.