Old 07-08-2017, 03:09 PM #1 (permalink)
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Default Raising Awareness and Taking Action

Hi,

Aren't we all frustrated how time and time again doctors have not taken us seriously? Or how fibromyalgia is not considered serious enough for certain benefits, social help, disability payments, referrals to occupational/physical therapists etc? Or how people around us just see this outer shield we carry around, and think 'she/he does not look sick to me at all'? All of this even from our closest, dearest loved ones?

But I am sick. I am also very sick of all of this, so fed up that I've been wondering how we can take action, raise awareness, so that the world can finally start taking fibromyalgia seriously.

ALS had the ice bucket challenge and it was amazing how much awareness they raised. (not to mention funding for research and patient well-being) Or the breast cancer awareness campaigns (even though the biggest killer for both men and women are heart-related issues.)

Why can't we do something similar for fibromyalgia?

Of course, the reality of the world is that many will still not take us seriously. In part because fibromyalgia is not in the same category as breast cancer, or ALS etc.. (and in no way do I want to compare such illnesses, one simply cannot.)

But I want people to know that fibromyalgia is there every single minute of my day, for the rest of my life. Even when I am on medication or in all kinds of therapies, yet often stuck at home, not even daring to dream of a pain-free life that does not tire me out within 10 minutes. it is there, all the time. There is no cure. There is no end.

I don't want pity, I only ask for understanding and acceptance.

So any ideas?

(After a basic online search, I found out that May 12th is the World Awareness Day for FM/CFS/ME, but I had personally never heard of it. )
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Old 07-10-2017, 01:22 AM #2 (permalink)
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Default Re: Raising Awareness and Taking Action

Hi Vicky,

I admire your passion to initiate change and awareness but I'm not sure I have any great ideas for you.

From where I am at the moment in my head it seems such a daunting task to stand up and shout to the world about this terrible affliction of fibromyalgia. I would be forever grateful though to anyone who has the energy to do it. We really do need to be better understood.

Sorry I'm not much help...but I hear you.
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Old 07-10-2017, 03:53 PM #3 (permalink)
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Default Re: Raising Awareness and Taking Action

I think that the challenge is that in each of these cases you mention, it has not for the most part been the afflicted who have created the awareness and raised funding for research, but the people ( often parents) who love the people who are afflicted.
And/or someone who is afflicted and has lots and lots and lots of money can jump start something.

Because, of course, most of those who are sick with whatever it is don't have the energy. And often don't have a lot of money either.

When enough people who care for someone with FM decide to do something like that, then it will happen.
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Old 07-11-2017, 03:40 AM #4 (permalink)
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Default Re: Raising Awareness and Taking Action

Quote:
Originally Posted by sunkacola View Post
When enough people who care for someone with FM decide to do something like that, then it will happen.
I sadly have to agree with this. We need healthy people fighting for us.....
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