At a social engagement not too long ago I met a friend of a friend that has Fibromyalgia. I was very excited when I was introduced to her to talk about it, The Fibromyalgia Crusade and all those other goodies that go along with someone you assume is of like circumstance. Well the excitement was completely one sided. She did admit to having Fibromyalgia but looked me dead in the eye and said she took some vitamin supplement or another and did not have any more symptoms. And that was all she would say. I went to my purse to show her one of our postcards and she stopped me before I even opened my bag, saying "Don't give me anything about it, I already know what I need to know". OKAY, I thought. I continued to try and engage her and she just looked at me like I was a complete idiot. She explained she had it for 30 years and had not suffered from symptoms since she started this supplement. I tried to ask her about how it started, what she felt the cause or "trigger" was. I was given a blank stare and she repeated once again that this supplement has taken all her symptoms away. She was looking at me like someone with strep-throat that was refusing to take antibiotics! Like the cure to this ailment was so obvious, easily obtainable and proven, I was just the moron that had missed the memo. It was an annoying and strange exchange and I wanted to shout at her, "You did not have Fibromyalgia, you had a vitamin deficiency!". But of course I could not do that so moved on to chat with other folks at the party.
I came home and researched this miracle cure for Fibromyalgia that you, I and the other 6 million people with Fibro in the USA have been missing out on. It was pure testosterone and illegal in this country! I have no idea how she gets her hands on it but as many of you know I spent months on high-dose steroids to treat the strokes I had last summer and am NOT A FAN of the side-effects. When I told my husband what it was he laughed and said, "Yeah, she kinda did look like a dude!". So sorry folks, no miracle vitamin for Fibro that I can recommend. But it was an interesting experience and really got me thinking. One of the most important components of true support is not forcing your ideas on others, not using your individual experiences as the rule and certainly not assuming everyone is like you. I have been approached by MANY claiming one vitamin potion or another has cured their Fibro and given them their life back. See they want my readers, they want YOU! They want my voice to shout out the validity of their multi-level marketing product, and when I refuse to agree that Joe Schmoe sitting in Texas has the cure for Fibro, but none of the doctors, researchers or scientists can even find the cause, I am told I don't want to get better.
It is the anger, hate and animosity coming from the Fibro community to the Fibro community that got me all hot and bothered once I published my blog and started to meet other patients. I saw so many tearing their fellow-suffers down because they could not agree on cause, treatment or cure. I personally have received far more hate and criticism from Fibromyalgia patients than anyone else in my efforts to spread awareness. And I believe this is a truly disabling component to the acceptance of Fibromyalgia as a real and viable ailment by both medicine and society at large. If the patients cannot agree, band together and form a united front, accepting the differences inherent in all of us, we have nothing to fight for our right to be heard with. It is such a shame folks like to spend more of their precious energy fighting with, bad-mouthing or criticizing other patients because of their chosen method of dealing with their Fibro. Many have found ways to manage it, live with it, even contain it so they can live the rest of their lives in a relatively normal way. But just because one person has found their magic potion does not guarantee others will obtain the same relief. It is with an open mind, giving heart and commitment to honesty we can all better serve our fellow Fibrates, and ultimately ourselves.
Thanks for joining,
Leah
