Fibromyalgia & Chronic Fatigue Syndrome Awareness - Not Just a "Day"
Tuesday, 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. The NFA has suggestions on other ways to get involved as well as a list of events going on around the country.
If there's not an event in your area and you haven't planned one (and really, how many of us have the energy?), you might be feeling like it's too late to take part. 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.
Talking about our illnesses openly can be scary - how many of us have been told we're crazy, lazy or worse? I find myself talking about it a lot, mainly because it's common to ask someone you've just met what they do for a living. This has lead into conversations about FMS in a variety of settings. It amazes me how often I find someone who's close to a fellow fibromite, and a couple of times I've found someone who was newly diagnosed, scared and confused.
What I've learned is this: if I keep my illness to myself, people I encounter will have no idea that they know someone with FMS. Just that little bit of knowledge makes them more aware, 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 and possibly be more understanding.
Of course, not every situation lends itself to talking about illness, but if you simply refuse to talk about it, you'll never make the rewarding connections I've been able to make.
Other small ways you can raise awareness are:
- Contact your local media to tell your story. The NFA has provided a press release template.
- Get an FMS or ME/CFS t-shirt and wear it to the grocery store, to work, to the park, wherever. (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 by leaving a comment below!
Comments
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
hi! i have someone who acts like i am making up my problems so i just avoid her as much as possible because i am constantly on the defense with her but a lot of my family and friends know about my fibro and really make an effort to help me deal with all the problems associated with it. Don’t hesitate to use the electric carts! That is why they are there. I had to fight the walmart store greeters in our town because they kept telling me i just needed to walk more. I regularly take an 88 yr old friend of mine shopping and she walks while i ride so imagine the comments i get. i just brush them off and brag on her being so healthy.
geraldine, talk to the manager! that’s none of their business, and they have no right to say things like that! i’ve had to complain at my walmart too, because they never have carts inside, and when i ask the greeters to get me one, they tell me to go out to the parking lot and get it myself. it defeats the point of wheelchair parking if i have to walk across the parking lot to get a cart to lean on!
adrienne,thanks for the ideas! may 1st was also blogging against disablism day, if you check out http://blobolobolob.blogspot.com/ you can see all of the posts made!
btw…..the entire month of May has been designated CFS Awareness Month!
Hello. I find that most fibro/cfs patients know a lot of what is a scam and what is good information however the problem are friends, family, co-workers,etc. They see THE CURE and wonder why on earth you aren’t going for it? I have had relationships damaged due to people falling for this stuff and then get nasty with me because I won’t try it. I have had fibro/cfs over 20 years and my mother has had fibro over 50.I get up and go to work everyday and give up having a life because that is the only choice I have. I think we know a bit more about it than some novice who happens to come across an add advertising a miracle cure. Why people don’t get it that I would do anything humanly possible to feel better if there were something I could do is beyond me. I am to the point where I wish I could go off in the woods and live with the squirrels !
I have a GOOD friend who recently met another lady about my age who also suffers from FMS. She ( my friend) called me up & was SHOCKED !! She didn’t realize just how much that I do suffer. I said ” Well, now you know why you haven’t seen too much of me in the past 3-4 years ” !! When I say I’m feeling BAD…… I REALLY am feeling BAD !! She had NO clue….even though I’d try explaining it to her MANY TIMES.
I commend you for what you are doing to educate and spread awareness of FM! Thank you for your site. It means so much to have a fellow FMer speaking out! Early on, I would not talk about my condition for fear someone would think I was complaining. Now, I talk about it every chance I get, to spread awareness. You are so right when you say we should talk about it, to spread the word. I too, have made invaluable connections by speaking out. I began a FM support group in my community with one of the goals being to increase awareness. We had t shirts made up and will be passing out literature from the Fibromyalgia Network on May 12th! I believe each one of us can make a difference in increasing awareness in our little corner of the world!
I SO MANY TIMES WILL NOT USE THE CARTS AT THE STORE BUT ALWAYS PAY FOR IT LATER, I DON;T HAVE A BIG SUPPORT NET AROUND OF FAMILY AND FRIENDS SO IT VERY HARD TO KEEP POSITIVE
Is there a press release template for people with Chronic Fatigue Syndrome as well? It would be most appreciated. I’ve posted about my own experiences with CFS here: May 12 is Chronic Fatigue Syndrome (CFS) Awareness Day
Christina,
There’s not a template press release for ME/CFS that I’ve seen anywhere. If there is one, maybe someone will point us to it.
Christina,
I just came across sample letters for elected officials and a media guide from the CFIDS Association. You can find them here:
Letters & Media Guide
Hope this helps!