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Social Media: A Source of Fibromyalgia Hate? #lovebeatshate

Posted Feb 10 2011 7:42am
Image via Wikipedia (Note: Today I am participating in another edition of the Love Beats Hate blogging event. Please check back tomorrow for my weekly Mission 2011 post.)

It hard to believe that social media, my largest reservoir of support in dealing with my chronic illnesses, is also used by people to deny the existence of fibromyalgia and bash people living with it.

I don't deny that sometimes living with fibromyalgia is just bull$#*@! However, I know fibromyalgia is not some made up illness people are feigning in order to qualify for disability benefits, get out of working, be lazy, evoke sympathy from others, etc., etc., etc. So it's hard not to hate back when other people in social media level these and a myriad of other accusations against people living with fibromyalgia.

Yes, I know, there is free speech and everyone is entitled to their own opinion. If this "free speech" really bothers me, of course I can just ignore or block these people and their negative campaigns. I can also interpret these attacks as just another example of the "but you don't look sick" mentality that seems to prevent others from understanding and supporting people who live with invisible illnesses. Which maybe is my cue to do more to raise awareness and educate people about what living with a chronic, invisible illness "looks" like.

But let's be honest. Since there is no way to prove without a shadow of a doubt that someone has fibromyalgia using an objective test, like an x-ray, MRI or blood sample, the door of doubt is open. If the door is open, people will go there. It doesn't make what they say and do online right, but it does unfortunately give them an opening to question and cast dispersions.

While the online fibromyalgia community does its best to shut down these hate sites, pages and discussions, it isn't just individuals online who are prejudice against fibromyalgia.

For example, did you know that many long-term disability insurance carriers limit benefits they pay out to people diagnosed with fibromyalgia? I didn't until I was denied ongoing benefits after two years of being disabled by my severe fibromyalgia symptoms. When I appealed their decision, the long-term disability insurance company didn't even try to build a case denying I had fibromyalgia. No, quite the contrary, they reviewed my medical records and declared that fibromyalgia was my primary disability.

The message they sent me was something like: "Why yes, she is disabled, but unfortunately we don't provide long-term disability benefits for people with fibromyalgia after two years. Sorry."
I image them laughing all the way to the bank with the money they saved giving me the shaft.

So when I saw an advertisement on Facebook recruiting volunteers who have fibromyalgia for a study of an investigational blood test to confirm the diagnosis, I wrote the number down. I called yesterday to volunteer and my appointment is on March 2nd. From where I stand, giving two ounces of blood and 45 minutes of my time seems like a small price to pay to help prove that fibromyalgia does exists and confirm without a shadow of a doubt that I have it.

Quite frankly, any efforts made to get the diagnosis of fibromyalgia out of the garbage can and into the realm of cold, hard scientific fact will have my support and, if possible, my participation.

So you see, it's not just love that beats hate. I'm rooting for science to find a way to prove the diagnosis of fibromyalgia and silence the nay-sayers, the discriminators and the disbelievers. Until then, I am hopeful that the power of social media will continue to empower people living with fibromyalgia to take a stand against online hate and send a clear message that bashing people due to their invisible illnesses will not be tolerated.

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