Finding Your Voice

As patients, we often find it exhausting to continue talking about our lives with inflammatory bowel disease. However, the lack of awareness about life with IBD, proves that our stories need to be dripping off the tips of our tongues constantly. Standing up for ourselves. Telling our stories. Speaking our truths. Advocating.

Yes, advocacy. Specifically policy advocacy. Policy advocacy is taking awareness straight to the halls of Congress where our disease is being categorized and compartmentalized into appropriations and legislation. It’s interesting how whenever I approach the topic with a patient, their first reaction is to shake their heads. I hear excuses about not being qualified. Not knowing where to begin. And not wanting to get into politics. Well, I would like to bust a few myths about policy advocacy as well as give you a few tips on how to advocate for IBD related legislation.

When you think you're not qualified for advocacy

No one is more qualified than you to tell your story. The foundation of advocacy is storytelling. Giving facts about life with IBD to give a small insight into what living with IBD is like. A personal touch goes a long way in trying to describe inflammatory bowel disease. Prepare a small “elevator speech”. Make sure you have the basics and the most gripping part of your story. Here’s my own elevator speech:

Hi! My name is Brooke Abbott. I’m a single mother living with a J-pouch due to my fight with ulcerative colitis. I was diagnosed in 2008. Became a mother in 2009. Became a single mother in 2011. Had my colon removed in 2012. I was on my way to becoming a television producer when ulcerative colitis prevented me from continuing my work. I was unable to get health coverage until 2012 when ACA get in, in my state. I now have gained over 40lbs.

I’m able to receive my treatment once a month and am healthy enough to coach little league baseball. I’m also healthy enough to sit here with you all to speak for those patients who can’t speak for themselves. And to speak for my son & other families affected by IBD.

Depending on my audience & time allotted I will adjust my speech. I often practice this speech in the mirror before I go in. Remembering it so I don’t drag on or get lost. And reminding myself that no one can tell my story as I can. And that my story will make a difference.

There is no age limit to advocating. Everyone, at any age has an opportunity to speak their peace. My 7-year-old has written letters, attended Day On The Hill events, and marches. If he asks to do it, I find a way to include him.

Feeling like you don't know where to begin

There are more resources available to help you reach congress than you know. The first thing is to reach out to an organization that has a policy platform for IBD. Organizations like The Crohn’s & Colitis Foundation and The Digestive Disease National Coalition have policy agendas already laid out for advocates to use as a starting point. Download the agenda and look it over. Find three, “asks”; asks are what we are asking members of Congress to consider; that you relate to the most. The ones that speak to your heart and that you can easily weave into your story.

When you find your top three asks, find out who your representatives are in both the House and the Senate. Enter your address to find your two U.S. Senators & your district Congressperson. Then click on their legislative profile to see their voting record in relation to health issues. You may also find some of your asks in their legislative profile already, as health-related pieces of legislation can often stay on an agenda until it is passed or repealed. Research your rep, so that you can have an informed conversation with their staff members during your meetings.

Once you’ve done all of this, reach out to the respective organization about their public policy forum days. What is a public policy forum day? Well, its a day when that particular organization gathers advocates, caregivers, patients, doctors & lobbyists to have their day on the Hill. You will have meetings with your representatives & other members of Congress to speak about that organization’s legislative agenda.

What to expect on a "Day On The Hill"

My very first time at a public policy forum was nerve-racking. I just didn’t know what to expect. I was familiar with advocacy and policy advocacy, but not behind another organization and their legislative agenda. It was honestly the easiest work I’ve ever done. When you arrive, you are given a meeting prep. They sit you down in a big group and give you some information you can use in your discussions. Information from the experts, doctors & scientists that help when presenting information on budget needs for the IBD community. They also give you a quick rundown of how your meeting will go, who you will meet with and how to conduct a meeting.

You will also get your schedule for the day, which includes folders to leave in each office and personal copies of the legislative agenda. You will be placed in a group for each meeting and will more than likely meeting with the health or policy legislative aide of that Senator and/or Congressman.

It’s best to remember that the Day On The Hill is a non-partisan event. Most of the asks and pieces of legislation you will be discussing will have bi-partisan support. So, you do not have to belong to a particular political party to participate. You don’t really have to be politically inclined.

You just have to care about your health and be willing to tell your story. After your day on the hill has concluded, stay in touch with those Legislative Aides & pieces of legislation. Using websites like congress.gov, govtrack.com, countable.

What advocacy can I do from home?

You do not have to go to Washington D.C. to make an impact. Pick up the phone and call your representatives. Print out some postcards and mail them in. When you call, have a speech ready, take a deep breath and go! Here are some great convo starters:

• Hi, my name is (Insert Name) and I'm Senator / Congress(man/woman) (Insert Representative’s Name) constituent from (Insert Your City & State). I wanted to thank the Senator/Congress(man/woman) for their vote on (Piece of Legislation You Like Related to IBD). As an inflammatory bowel disease patient, I appreciate her/his hard work and dedication to health-related issues. Please ask his/her health legislative aide to also consider (Insert Name of Another IBD Related Bill or Idea for a Piece of Legislation).
• Hi, my name is (Insert Name) and I’m a constituent of (Insert City & State). I’m also a patient/caregiver living/caring for someone with Crohn’s disease/ulcerative colitis. I am hoping that Senator/Congress(man/woman) will consider voting for/against (Insert Piece of Legislation) as it will impact all patients with chronic illnesses like IBD, making their lives better/worse.

Try and keep your conversations short and to the point. No matter the political affiliation or vote, please be polite. And don’t be afraid. These are YOUR representatives in the United States Congress & Senators. They are your voice. But how can they know what you want if you don’t speak up?

This is what I say to myself before I walk into every legislative meeting: Be Brave. Be Heard. Change The Nation.