How can I change that? After I was diagnosed with FM at age 24, this is what I wanted to know. This disease caused me a deep mistake. I wanted to know how to ensure that myself and others with FM have a better future following my learning of this syndrome and finding several helpful treatment strategies. The answer, I learned, is advocacy — in support of FM awareness and related issues.
Were you aware that only five manual letters on the same subject are required to make a lawmaker’s office concerned? As a Michigan Partners in Political Procedure (MPIP) student, I was surprised to learn. MPIP is an eight-month training in leadership advocacy for disabled persons or parents of disabled children. The program, coordinated by the Community Advocacy Association in Michigan, runs in various countries.
The number one lesson I have learned from this class is that everyone can advocate a clear message and passion to be heard as long as you have a voice (voice, writing, signs, etc.). Although my MPIP training is valuable, effective advocacy is not necessary. I realized this when I participated in the annual Advocacy Summit held in Washington D.C. by the Arthritis Foundation. March 2000. Two days’ seminars and independent meetings with our congressmen and senators were held by hundreds of fibromyalgia survivors and supporters. Most my Summit colleagues did not have any formal training in advocacy – but still participated. I was inspired by that because I felt confident to be involved only after my MPIP training.
While I might receive further training in public policies and advocacy, my new friends and I have also learned about the needs of the FM community — increasing awareness and research, providing medical and health providers with ongoing educational programs, improved resources, etc. It has made us effective advocates to share these needs and sharpen our stories.
We learnt that we have important allies in government from meetings with our legislators. They ‘re very caring, but they’re also very busy. We must therefore propose specific actions to help us, as well as sharing our concerns. Examples include increased NIH expenditure on research related to fibromyalgia, healthcare and other therapies, insurance coverage massage and medicaid treatments. If no clear action is required, you can concentrate to build a relationship with the lawmaker to use you as a resource for fibromyalgia questions. It is important that the issues are monitored and educated.
More than the leaders of the government is in favor of advocacy. You advocate every time you train your family, a colleague, an employee, a journalist, or, yes, a doctor. All groups of people have the same principles of advocacy. I encourage you and others to advocate with FM for yourself. My supporting group and I were extremely successful in writing letters and contacting lawmakers and other local leaders using the following tips.
Tips for writing a personal letter:
• Be short (the best page)
• Concentrate on one subject
• Tell your story (how you or a loved one are affected by the matter)
• Specify your position
• Please make an application
• Reiterate or stress to you and many others what this will mea
• Make sure you ask a specific question and ask for an answer (Can I rely on your assistance? Will you make a resolution to support FM sensitivity?
• Reader thanks
• Providing additional information, materials or support
• Use correct addresses and correctly write the name and title of the person.
• Include your name , address , phone number, e-mail (and, if applicable, your membership, titles and/or roles)
• Be kind.
• Use information only accurate
• Be readable, correct grammar, free from errors of spelling and neat.
For a bigger impact:
• Write handwritten letters, with handwritten letters (readable)
• Use your own words — don’t copy the letter form
• Invite others (five letters are considered a very serious matter according to several legislative sources) to write their own letters to the same person.
• Tips to meet law-makers:
• Talk one or two questions in each meeting
• Ask the lawmaker about your position.
• Promote issues
• Ask which employee is going to be a contact on the subject
• Thank you for taking your time to meet you.
• Say that you will help with FM issues as a resource
• Personal thank you note to follow up. Restore your position briefly and, if appropriate, include information.