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Fibromyalgia & CFS Blog

By Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS

Fibromyalgia & Chronic Fatigue Syndrome Awareness - Not Just a "Day"

Tuesday May 6, 2008

Monday, May 12 is the official National Awareness Day for fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), and events are planned for on and around that day, including the National Fibromyalgia Association's Walk of Fame 5k walk/10k run in Orange County, Calif.

If there's not an event in your area and you haven't planned anything (and really, how many of us have the energy?), you might be feeling like it's too late to do anything. You're probably right, if you look at this as a one-day-a-year thing. Instead, let's look at Awareness Day as a reminder that we can all make small strides to raise awareness when opportunities arise.

I had some odd things happen a couple of weeks ago. First, I actually had several opportunities to meet new people. Second, I talked openly about my FMS, which I usually stay pretty quiet about. Third, I found 4 people who are close to someone with FMS and 1 person who was recently diagnosed and confused about what to do next.

What I learned is this: if I continue to keep my illness to myself, people I encounter will have no idea that they know someone with FMS. Just knowing that they do makes them more aware. They'll probably pay a little more attention to the next Lyrica commercial, and maybe they'll even ask some questions. The next time they come across someone with FMS, they'll know just a little more about it.

I know a lot of people with FMS or ME/CFS are told they're crazy when they talk about it, and that can make it scary to be open. For me, at least, overcoming the fear of how people might react helped me make valuable connections with people.

Other small ways you can raise awareness are:

  • Contact your local media to tell your story. (Tip from a former TV news producer: in a smaller community, ask for the weekend producer. In a bigger area, get ahold of the health producer or reporter.)
  • Get an FMS or ME/CFS t-shirt and wear it to the grocery store. (I don't like recommending commercial sites, but if you Google "fibromyalgia shirt" or "cfs shirt" you'll find plenty.)
  • Contact local colleges to see if you can speak to nursing, physical therapy or other medical classes.

Have you found good ways to raise awareness and help people learn about these conditions? Share your ideas here, or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum (look under Newsletter & Blog topics.)

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Comments

May 8, 2008 at 5:13 am
(1) liz says:

Great Ideas to have available. Gee, I never knew that there was an awarness day, so there ya go, I’ll get buzz busy on that one.
Every little bit helps! Ü

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