Working with Community Leaders
How can I make a difference? This is what I wanted to know after being diagnosed with FM at the age of 24. I felt deeply wronged by this illness. After learning all I could about this syndrome, and finding several helpful treatment strategies, I wanted to know how I could help ensure a better future for myself and others with FM. The answer, I learned, is advocacy—reaching out to community leaders in support of FM awareness and related issues.
Did you know it only takes five handwritten letters on the same subject to create a state of concern in a legislator’s office? I was very surprised to learn this as a student in Michigan Partners in Policymaking (MPIP). MPIP is an eight-month advocacy leadership training program for people with disabilities or parents of children with disabilities. The program, coordinated in Michigan by the Association for Community Advocacy, runs in several states.
The number one lesson I learned from this class: anyone can advocate as long as you have a voice (vocal, written, sign, etc), a clear message, and a passion to be heard. While my MPIP training is invaluable, it is not necessary to advocate effectively. This point was made clear to me when I participated in the Arthritis Foundation’s annual Advocacy Summit in Washington DC in March 2000. Hundreds of fellow fibromyalgia survivors and supporters came together for a two-day seminar and independent meetings with our Congressmen and Senators. Most of my Summit colleagues had no formal advocacy training—and yet they were attending. I was inspired by this because it was only after my MPIP training that I felt confident to participate.
While perhaps I had more training in public policy and advocacy issues, my new friends and I were equally versed in the needs of the FM community—increasing awareness and research, offering continuing education programs for physicians and health care providers, better resources, etc. Communicating these needs and sharing our personal stories is what made us effective advocates.
From the meetings with our legislators we learned we have important allies in government. They are very caring people, but they also are very busy people. So in addition to sharing our concerns, we must suggest specific actions they can take to help us. For example increase NIH spending on fibromyalgia related research, work to have insurance and Medicaid cover massage and other complementary therapies, improve healthcare, etc. If there is no clear action to request, you can focus on building a relationship with the legislator so that they will call on you as a resource for fibromyalgia issues. It is important to follow up and keep them educated on the issues.
Advocacy applies to more than government leaders. Every time you educate your family, a co-worker, an employee, a member of media or yes even a doctor, you are advocating. The same advocacy principles apply to all groups of people. I encourage you to advocate for yourself and others with FM. My support group and I have had great success using the following tips for writing letters and contacting legislators and other community leaders. (See “Increasing Awareness in Michigan ” in this newsletter to learn more about our successes.)
Increase FM awareness today—ADVOCATE!
Tips for writing a personal letter:
- Be brief (one page is best)
- Focus on one issue
- Tell your story (how the issue personally affects you or a loved one)
- State your position
- Make your request
- Reiterate or emphasize what it will mean to you and many others
- Be sure to ask a specific question and request a response (Can I count on your support? Will you introduce a resolution in support of FM awareness?)
- Thank the reader
- Offer additional information, materials or assistance
- Use correct addresses and have the person’s name and current title spelled correctly
- Include your name, address, telephone number, email (and if relevant, your affiliations, titles and/or roles)
- Be courteous
- Use only accurate information
- Be legible, grammatically correct, free of spelling errors and neat
For a bigger impact:
- Handwrite your letter—handwritten letters stand out (be sure to write legibly)
- Use your own words—do not copy from a form letter
- Inspire others to write their own letters to the same person (five letters are considered a very serious issue according to several legislative sources)
- Tips for meeting with legislators:
- Discuss only one or two issues per meeting
- Ask legislator his or her position on the issue
- Encourage questions
- Ask which staff person will serve as a contact on the issue
- Thank him/her for taking time to meet with you
- Say you would be happy to help as a resource on FM-related issues
- Follow up with a personal thank you note. Briefly restate your position and enclose information as appropriate.
Helpful web sites:
The House: www.house.gov/
The Senate: www.senate.gov/
The White House: www.whitehouse.gov/
National Institutes of Health: www.nih.gov/
Your State Government: go to www.google.com/ and type “your state’s name” government
Tips taken from MPIP resources including Dohn Hoyle, Association for Community Advocacy, with acknowledgement to the Political Action Guide of Groundwork, a Detroit based organization.
Sharon Waldrop is a co-founder and executive committee advisor for the National Fibromyalgia & Chronic Pain Association’s Leaders Against Pain Coalition, is one of four fibromyalgia patient advocates internationally in OMERACT (OMERACT is an international, informally organized network aimed at improving outcome measurement in rheumatology), and she is a volunteer for the Arthritis Foundation’s Speaker’s Bureau. She currently lives in Michigan with her husband and two children.
