Easy Ways to Advocate
May 12 is International Fibromyalgia and CFIDS Awareness Day. This is a wonderful time to raise awareness for CFIDS and Fibromyalgia; awareness of what the diseases are, who suffers from them, how they affect our society, and why they deserve attention (you would think some of these are the same, but trust me, they aren’t).
If you have no previous advocacy experience or are not in good enough health to do what is typically thought of as advocacy such as marches and visits and fundraising walks, it can be very intimidating to think of doing anything. But oftentimes, the once-a-year get togethers for a cause are less effective then low-level, local advocacy. By simply taking part in a support group, you are aiding the advocacy cause.
Here are some very easy ideas to do to draw attention to CFIDS and fibromyalgia on a local and a national level:
Tell your story! This is probably the most important one. Its one thing to write off “overweight, depressed women” the way the New York Times recently did. It’s quite another to tell Joan Smith, mother of three whose husband has had to take a part time job to take care of her that it’s all in her head. Letters to the Editor (keep within their word count, don’t rant about conspiracy theories or the evil drug companies and make sure your spelling and grammar are mostly correct), guest editorials (if you have some experience writing), and letters to local, state, and federal government officials also have an impact. If you don’t have email, hand-write. If you don’t like to write, call. A sample call would be “Hi, my name is Mrs. Joan Smith and I live at 123 X Street in Representative DeFazio’s district. I am calling because today is International CFIDS and Fibromyalgia Day and I have lived with these diseases for five years. (Then state the reason for your call, for example-) I am concerned about the biases in the disability process that make it harder for patients like me who do not have clinical lab results to get disability. It took me three years to get disability and I had to declare bankruptcy. Thank you very much for your time. Other topics might be pain management, lack of OHP coverage for patients (I would strongly suggest this one!), discrimination by medical professionals, discrimination in the workplace, parenting and these conditions- whatever you feel passionate about. Of course, simply saying that you want it to be known what you have gone through and that there are millions like you is also fine.
Take part in “virtual events” Both http://www.cfids.org and http://fmaware.org have “virtual” walks, candlelight vigils, and other events. Both websites also have awareness materials you can buy such as shirts, bumper stickers, etc. If someone wants to do something in your name, the virtual events are a great way to aid the cause and draw a little attention. They can also write a letter as a friend or family member.
Take advantage of resources you have. Ask to have a notice put in your church bulletin, book club newsletter, or other organization (a sample notice will be put at the end of this), or ask to have a religious service celebrated for CFIDS and FM patients. See if your doctor’s office is willing to put out brochures or maybe read one! (contact me if the answer is yes)
