My Life with Fibro

Fibromyalgia Awareness Day Thoughts

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Last night I expressed concern relating to Fibromyalgia Awareness Day.  Tonight I will address said concern and share what’s been on my mind of late.

After reading many posts relating to today, I am reassured.  The bulk of pieces I found were uplifting, honest, and educational.  I am consistently impressed by the strength of the chronic pain community, and grateful for my fibrofolk friends.  I am proud to be a part of a community which is proactively taking steps to inform those unaffected by chronic pain and other invisible illnesses about…

Wait.

Of what are we working to inform them?  For what do we wish to raise awareness?

This sounds like a harsh question, but it’s had me doing some serious introspection over the last few weeks.  And I believe, if we can’t answer it selflessly, we have no need for Fibromyalgia Awareness Day.

Do we want someone to feel sorry for us?  Or do we want someone to understand fibromyalgia?

Are we concerned people think we are crazy and/or weak?  Or do we wish they knew fibromyalgia is an explanation, not an excuse?

Can I honestly define the purpose of an awareness day?  Or can I simply determine my interpretation?

Am I completely missing the point?

No.

I am, however, hoping the positive energy I’ve seen on the blogs today sticks with us as we go throughout the rest of the week, month, and year.  I hope we can share it with fibrofolks who are struggling, caught in a flare, or feeling lonely.  And, as I mentioned on Twitter today, I pray we set a high standard and don’t lead others to think fibro is an excuse for, or result of, laziness.

I hope we recognize it is our responsibility to help others understand fibromyalgia; we need to provide (and/or seize) opportunities for education, instead of simply complaining about symptoms.  And, when confronted by someone close to us (or otherwise) who doesn’t “believe” in fibromyalgia, I wish us the ability to calmly say “You’re right.  Fibromyalgia might not exist.  But, it doesn’t matter.  The symptoms do.”

Thank you for your powerful example of strength and honesty.

Come back Thursday for my meaning of today.  And now, whatever your interpretation of the meaning of Fibromyalgia Awareness Day, please share it… along with a link to your post.

6 responses to “Fibromyalgia Awareness Day Thoughts”

  1. Ker

    I always appreciate your insight and amazing attitude, K8. My post about today was hardly inspiring but it’s where I’m at right now.

    http://queenandthepea.blogspot.com/2009/05/fibromyalgia-awareness-day.html

    Reply
  2. Amy

    Hey girl! I have a feeling that you might like my Fibromyalgia Day post!

    Reply
  3. Rochelle

    I so deeply appreciate you and your insights. You’ve had this for longer than I have, and I deeply desire to have your positive outlook. Like Ker, I’m not quite there yet. Still struggling with the loss of former self, still sometimes fighting denial and depression, trying to be happy/positive but it’s hard, not wanting to complain but just tell my story but not sure it comes across that way, and on and on I could go. Thanks so much for what you’ve said here! If you haven’t already, I have several posts about Fibro Awareness Day too, just go to my main blog and scroll down (http://rochelle-learning-to-trust.blogspot.com); I’m continuing to post throughout today until I’m done sharing my story. I’m trying to stay upbeat about it and just spread the word/understanding about Fibro. I don’t want people to feel sorry for me or anything like that; just trying to share my story/my heart/my fears/my insecurities about this illness, and hope that I can make a difference and raise true awareness.

    Reply
  4. Benia

    Thanks for asking the hard questions. It does need to be done.

    I recently rewatched one of my favorite movies, “Fight Club”. I thought about why people loved the club and I think it’s because being able to take the pain and suffering sustained made them feel like they could conquer anything. I think we, fibromites should take a lesson and feel the same kind of empowerment from our pain and suffering.

    Reply
  5. Ferienhäuser

    For me, Fibromyalgia Awareness Day just like AIDS Awareness or Cancer Awareness aims to empower the lives of those afflicted with these illness and to educate the general public about the said illness. Just like me, I am didn’t know the term Fibromyalgia until I stumbled upon here…but I knew that the best way to cope with any illness is how we deal about it and I am glad to see that you have a very positive outlook despite of having fibromyalgia. That is the best gift we can gift to ourselves, accepting our condition and learn to live with it positively.

    Reply
  6. Kimberley

    I have to agree that being positive is key to not only help others understand, but also to help yourself. A positive attitude goes a long way to help you endure whatever pain comes your way…

    But we all have bad days too– regardless of whether we have fibro or not. Hopefully people will understand that as well as understand that fibro needs to have its day just like cancer, aids, or arthritis.

    We have come a long way from it being “all in our heads” and its a strong step in the right direction. Hopefully, we can all as a community make more strong steps into our future and cure this thing.

    Reply

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