Thursday, February 10, 2011

Social Media: A Source of Fibromyalgia Hate? #lovebeatshate

Discrimination, Diversity, Equal rightsImage 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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WinnyNinny PooPoo said...

There are many disabling diseases that are "diagnosis of exclusion" like fibromyalgia meaning that the doctors can only exclude other diseases to know you have this one. I don't think the haters realize how many years of doctors and tests most people go through just to get a diagnosis.

Great post!

Jenn said...


Anonymous said...

Years before I was diagnosed with Fibromyalgia myself, I never once questioned it wasn't real. So you can't see it with tests, etc. but the symptoms are in the open, all shared by everyone with little differences... how does people from all over the world miraculously make up the same problems? Obviously it's real!

Lori said...

I am sorry that you have this chronic illness but even more sorry that you have been treated so poorly. I am thankful to read that you are choosing love instead of hate towards these people that are less then kind. Here's to love beating hate!

Fighting Fatigue said...

Great post! I just ignore idiots like this and don't give them the time of day. What little bit of energy I have is too precious to waste on people like that and I will not waste one moment of my time giving them any ammunition. It's not going to matter what anyone tells them, they are still going to make fun, poke and prod and joke about our illnesses. They're not worth it.

Emily said...

I definitely believe one day, and one day soon that there will be a blood test for fibro/CFS!

Maybe then people will believe us?

I have thrown the disbelievers out of my life. All except my mother, she's hard to throw away b/c of my son, but she will never believe I am as sick as I claim. She will never get it after 8 years of chronic illness.

Anonymous said...

I think you've hit a real gem here... however much we do to spread awareness and love, many people (and especially those in power) will never let go of their mistrust, fear and hatred until they have proof... so working with science (and open-minded scientists) is a real way forward.