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Why such denial????
4 Replies
ptalana - January 30

Hi all, since my diagnosis about a year ago I've encountered such negativity regarding fms. After my accident four years ago, countless tests, was finally diagnosed a year ago. I was so relieved to finally have a name to this condition that has turned my life upside down. I had no idea at the time all the controversy that surrounds fms and it's sufferers. I still have a hard time wrapping my head around all the negativity and denial. Some of the things that I've read are so harsh and ugly, from us being drug seekers, hypochondriacs, and nuts! Where does this come from? With all the proof and the many sufferers what does it say when medical professionals still can't accept the validity of fms? How difficult it must of been for those sufferers some twenty years ago and more who were treated as outcasts, I can't imagine!
I really feel compelled to try to change the stigma that still shadows fms. I'm not sure what, but would like all your ideas.
Maybe understanding why fms brings such negativity we can perhaps try to illicit change. I know that the atmosphere has begun to change, but we still encounter ignorance not only in the public sector but also the medical. We really need this in order to get the research necessary to perhaps one day get a cure.
What to you think?
Hope this day finds everyone well, Patty:)

 

ptalana - January 30

Edit, should have asked "what do you think" oops I even re-read this twice!;) Patty

 

ptalana - January 30

Not sure why I posted in the wrong forum sorry again guys.

 

Canada17 - January 31

For years I have suffered with bronchitis. A few years ago, I went to my then doctor and explained all my symptoms to him and asked him what it could be. He told me I had the "100 day flu". I had never heard of this before and asked if you could get it more than once. He said you couldn't. Every winter since I was about 15 or 16 I would get a cold that would develop into bronchitis. Every year each case would be worse than the last and take longer to clear up. I told him this and he told me that is probably wasn't the "100 day flu" and told me I had been born with a bad set of lungs. He compared them to buying a "lemon" car.

That doctor was an idiot. He was so "old school" he couldn't see the forest for the trees. He was also my parents' doctor. My parents were pack a day smokers all my life. My dad quit when I was about 15 but my mom continued and made up for what my dad wasn't smoking. They always smoked in the house and car. I had been exposed to second and third hand smoke until I turned 23. That was the year I moved out of my parents house and in with my then boyfriend (now husband). I quickly realized just how bad the air quality was in that house.

My point is that there are doctors out there who learned what they know so long ago that they aren't willing to forget what they were taught about Fibromyalgia. This doctor didn't think that my lung problems had anything to do with my exposure to cigarettes when in fact it has everything to do with them.

You are right that we need to stand up and say something if we want more research into finding better treatments and possibly, one day, a cure.

Keep talking to people about it. Search the web, you can buy t-shirts and bumper stickers that say things like: "Fibromyalgia. Stop the pain. Find a cure.", "Warning: Fibro Fog Ahead. Where was I going again?", and "Blessed be the Fibromites for through them we can witness determination and hope."

Also, the symbol for Fibromyalgia is a purple butterfly. It represents the metamorphosis of our pain into something beautiful. Fibromyalgia Day is May 12th; wear something purple!

Keep smiling, it's contagious.:)

 

Sonja44 - March 31

People are afraid of what they don't understand.

I've taken it upon myself to educate anyone who poo poos FM or CFIDS. It stops them in their tracks.

First thing I say is that MS used to be known as "Hysterical Paralysis" until MRI's identified transient lesions on the brains of sufferers.

Second, Auto-Immune diseases like RM, Type 1 Diabetes, FM, CFIDS, and MS are all Illnesses that have no known cause or cure...just treatment of symptoms. No one questions a child with Type 1 Diabetes or someone with RM...with "it's all in your head" crap.

Third, I tell them I hope they never have to live with a chronic illness...because it takes brave people to do so and until they do more research on the subject...this conversation is over.

You are sooo NOT alone! Stay strong in the fact you, my friend, are a warrior... battling pain everyday...and are here to confront ignorance with fact and dignity.

 

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