Be a Better Advocate for the FM Community

Monday, May 9, 2005

Reprinted from FM Online

Karen Lee Richards is the co-founder of the National Fibromyalgia Association. A professional writer and graphic designer, she spent 10 years as the assistant director of a statewide organization for the developmentally disabled in Tennessee. Recently she took some time to offer pointers for those interested in becoming more powerful advocates for FM.

NFA:What are the top considerations for people who would like to be FM advocates?

KLR: One of the biggest “do”s is to educate yourself. You need to know what you’re talking about. We all know how we feel. We need to know what the current research is, what the facts are about fibromyalgia, as opposed to misunderstandings and myths. Also, speak calmly and intelligently.

NFA: What are some of the things advocates should avoid?

KLR: Don’t whine, complain, or lash out in anger! When we do those things, people don’t listen to us. If we really want to be heard, and we want to make a difference, we have to sound calm and intelligent. They don’t give a lot of credibility to what you’re saying if you’re speaking solely from emotion. Share facts, not opinions and emotions.

NFA: How can advocates get the most current information, so they can advocate for the FM community?

KLR: Not to plug NFA or anything, but quite honestly, we are the best resource out there! There are some other good fibromyalgia groups, but you do have to be careful. You have to be very sure you know your source and that you have some idea how recently it’s been updated. If it’s still saying it’s a muscle disease, then you know it’s old information. Our magazine, our online newsletter, our website—hate to brag!—but we do have the best information.

NFA: Often advocates are requested to share their personal experiences with FM. Any tips for staying calm during that process?

KLR: Practice the story. Write it out, then ask somebody you trust to read it and give you honest feedback on how it sounds, or if there are places that are unclear. Or practice telling the story without getting angry. Get family or friends to help them with it. If they’re open to it, let them tell you, “You sound like you’re getting angry. You’re not making sense here because you’re getting emotional.”

The bottom line, whether we like it or not or think it is right or not, is we admire courage and intelligence and drive, and tend to shy away from people that are complaining, griping and angry. That’s just a fact. If we really want to be effective advocates, we have to approach it that way. If two people come up to you and one is calm and friendly, and the other is whining and angry, who are you going to pay attention to?

NFA: Is there ever a time an advocate should pass an advocacy oppoprtunity to another person?

KLR: Yes—if you know you do not have accurate, up-to-date information and you know someone who does. Or if you’re terribly uncomfortable—if you’re uncomfortable speaking in front of people, fro example, and it’s that kind of situation. I’m speaking at a church in a couple of weeks because the person they called first, who leads the support group here locally, doesn’t like to speak in front of groups. So she passed it off to me.

NFA: What role should support groups play in creating advocates?

KLR: A support group definitely should be educating the people, with handouts, with speakers, and that type of thing. Ideally, if you’ve got a good support group that’s willing to be active, the support group should be setting up opportunities to be an advocate locally in the community, whether it’s a booth at a health fair, or a walk-a-thon, or whatever. Prior to the event, the people that are going to be participating should be given a current, up-to-date fact sheet to share.

NFA:That’s important, because there’s so much new information being learned about FM. What role has the NFA had in the increase in information out there?

KLR: I think that’s a huge part of the reason that people have sat up and take notice. We’ve very definitely made an impact on the medical community. We’re tied in with all of the top researchers in the country, and have made a huge impact there. We know we’ve had an impact on the government because of our involvement with NIH, even on the committee to set criteria for the approval of drugs for FM. We know we’ve had an impact on individuals, just from the emails we get.

What tickles me is that back when I was first diagnosed, eight years ago, if you told someone you had fibromyalgia, they’d say, “What’s that?” Now if you say you have fibromyalgia, they say, “Oh, I know someone else who has that.” I think the NFA has played a big part in that.