MS Awareness Month 2014 and Telling Your Story

  • Each March is MS Awareness Month in the US and March 3-9, 2014, is MS Awareness Week!!  It is a great time to tell your story to educate and spread awareness of the disease and to bring hope and inspiration (provide comfort and courage) to others whose lives have been touched by multiple sclerosis.

    Next week in Washington, DC, hundreds of MS activists will be visiting lawmakers to ask for support on a few key issues and to invite them to join the MS Congressional Caucus.  During the annual NMSS Public Policy Conference, I’ve been asked to help lead a breakfast roundtable discussion on “Telling Your Story” to help participants prepare for their Capitol Hill visits.

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    The most important tool you have as an advocate for multiple sclerosis is your own story.  Stories resonate.  Stories inspire.  Stories speak to the heart.  Stories motivate action.

    Stories can identify shared values and help you connect with your audience, whether they be lawmaker, friend, peer group, colleague, family member, or stranger.  You can use your story to educate others about specific challenges or uncertainties you’ve experienced because of MS.  However, keep in mind that the best stories focus not only on heartbreak and despair, but also help answer the audience question - “What do you want me to do about it?”

    Use storytelling to influence public policy.

    In the case of office visits on Capitol Hill, you want to motivate lawmakers to support legislation and policies which improve the lives of those affected by MS.  Maybe you want increased funding for research or specific programs.  Or perhaps you want to inspire your representative to demonstrate a sign of solidarity with the MS community’s goals by joining the MS Congressional Caucus.

    Be clear and concise in your storytelling.

    In any setting, it is important to understand and respect the expectations of your audience.  If you are the keynote speaker at a conference, you may have 30 minutes to tell your story.  As part of a panel discussion or at a support group meeting, you might have 3-5 minutes.  For opportune moments with very busy policymakers, you should perfect your “elevator speech” and be able to connect, inspire, and motivate, all within 30-60 seconds.  

    Telling your story clearly and concisely in everyday words helps to give your message greater power and meaning.  Speak plainly and avoid using too many medical terms, legal terms, or abbreviations.  Also, avoid complicated policy language or jargon.

    Connect your story to your policy request.

    Make your story the focus of the meeting with elected officials. Connecting the story to the problem or need you are presenting and to the solution you suggestion will make your requests more relevant and meaningful.  Use your story to demonstrate how real people will benefit from the solution you are advocating.  Policymakers want to champion meaningful work that will benefit their constituents.

    Avoid too many statistics.

    The average person will remember a story over a bunch of numbers.  Avoid simply presenting data or relying on statistics, but instead use carefully selected statistics to lend credibility to your story.  Always make sure that statistics you do use are accurate, timely and relevant to the story you are telling.

  • Personalize your story.

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    Including details and naming the people and places in your story can help lawmakers recognize how policies affect the everyday lives of people with MS.  Take this opportunity to make sure that your elected officials know what multiple sclerosis is and its direct impact on you, your family, and your community.  Including details that vividly and concisely paint a picture of what you are describing will help to keep their interest.

    Speak to the heart.

    Evoking an emotional response in your audience, no matter who they are, helps to tap into the common values and feelings that we all share.  Use that emotional response to inspire action in others.

    So in developing your story, consider the following questions:

    How has MS impacted your life?  What challenges do you face?  What specific actions can lawmakers take to make a difference in the lives of their constituents?


    We all have a story to tell. What’s yours?


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: March 05, 2014