Thoughts on Fibromyalgia Awareness Day

Let me begin by saying I am 1000% for spreading awareness for fibromyalgia. I think it should be as well known and understood by people like arthritis or breast cancer. I’m so tired of it being the “invisible illness”. I’m part of the National Fibromyalgia Association and they sent an e-mail (and probably posted on Facebook too) about Fibromyalgia Awareness Day 2015. Here is the body of the e-mail:

“Dear Friend of the NFA,

If you love cooking, entertaining your friends, and supporting a worthy cause, then this event is worth your time and energy.

Feast Friendship and HOPE for Fibromyalgia Awareness 2015

NFA’s Feast, Friendship and HOPE event is to commemorate 2015 National Fibromyalgia Awareness Day (May 12th) and promote education and understanding of this life-altering condition. Please invite your friends to your home for a fundraising dinner, father at your favorite restaurant, or even have a cocktail party. Whatever you choose, your efforts will help to make fibromyalgia visible and more research possible.

Simply invite your friends, colleagues and family to your gathering and ask them to make a contribution – either through the NFA’s website or right there at your party. Make sure you take lots of pictures or video and share your experience with the FM community on the NFA’s social media pages.

You can host your own even between now and May 12th, 2015.

Your “Feast Friendship and HOPE” for Fibromyalgia event will help the NFA continue to support our community through social media as we reach those individuals in need of new resources and hope.”

Ok. I’m glad there’s an awareness day for us fibro fighters. I really am. But inviting friends over and asking them to make a donation? That’s just downright awkward… at least to me. I could never do that. There are so many of us who not only struggle with pain every day, but with our loved ones and colleagues not understanding our illness. I know awareness days for other illnesses involve walking/running, which the majority of us can’t do, so the NFA was trying to be creative. I wish I had a better idea, and I’m not trying to put down the NFA or insult anyone, but there has to be a better way. We need ads on television aside from Lyrica commercials that are just awful. (I take Lyrica, I just hate the way it’s advertised). We need national and international attention. We need TONS of research. And we need understanding. If I did this “Feast, Friendship and HOPE” thing, I’d not only feel awkward, but it would seem like I want my friends/family to feel sorry for me, which is of course not what I want at all. I’m sure this could be done for some people who have a strong support system, but for myself and many others, we can’t participate.

Does anyone have thoughts or opinions about this? Please feel free to comment, I’d love to hear what others think.

Thanks for reading.

6 thoughts on “Thoughts on Fibromyalgia Awareness Day

  1. I could never ask people for money. Just the way I am. I support Fibromyalgia awareness as it is one of the banes of my existence, but could never invite people over and ask for a donation.

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  2. Is there a color that goes along with this? Every other illness has one.

    What about instead of asking for donations it could be an action of art or bake sale of some sort that helps to raise the awareness. I’m not too sure.
    I’m recently diagnosed and still trying to figure this whole thing out.

    Liked by 1 person

    1. Some places promote purple, others show a cranberry color. We have an identity crisis lol.
      Yeah I’m not sure what to do for awareness either. I just know we need it!
      And no worries, I’ve been diagnosed for a year (but dealing with symptoms for over 3) and I’m still trying to figure this out. It’s not easy.

      Liked by 1 person

      1. My Fibro awareness bracelet is purple, dark purple and lilac.I remember where I bought it, but can’t remember the site off hand.The site has slowed down a lot, but is on facebook.

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  3. That sounds like so much work! I hate hosting get-togethers. Half way through I am about ready to excuse myself to bed every single time. I stopped hosting things years ago for that reason. I would much rather walk miles than host a dinner party….. and asking for money? Um, no. Can’t do it. Like you guys said, we are not here to make others feel bad for us, we just need some awareness is all. I like the bake sale idea. Or we just keep writing and spreading the word the best we can, but there has got to be some way to make a big difference in awareness. Dinner parties are not it I’m afraid.

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