People use The Fibromyalgia Fun House on facebook to ask questions pertaining to living and coping with Fibromyalgia in order to gain a cross section of answers. It's become a great source of information from people who actually live with the illness and thrills me to see so many coming together to offer support, encouragement and information to each other. Well the other day I had a question. Silly me, I don't know what came over me, but I guess I thought I had the right to ask it seeing as it's my page and all. I was hard at work updating The Fibromyalgia Crusade website and wanted to hear from patients who tried the "wellness" approach to managing Fibromyalgia, combined with modern medicine, and had absolutely no results or lessening of symptoms. By changing my life in a million different ways I was able to get out of the hell of unmanaged Fibro and recover a decent quality of life. But I know what works for one does not work for all and I wanted to hear from the patients who tried, but it didn't help.
So I posted the question. Came back a few hours later to look at the responses and almost spit my chips over one of the comments. An individual wanted to know why I was asking. They told me how terrible I was for trying to sell a "miracle cure" for Fibromyalgia. Blowing smoke up their asses, I believe was the phrasing used. I was shocked to say the least. Miracle cure? What on earth was this person talking about? As I continued to read the annihilation of my character their motives didn't become any clearer. By the end of the comment this person had chewed me up and spit me out. Told me I was terribly selfish for trying to make a buck selling poor sick people a false cure. Judge, jury and executioner, I had been tried, convicted and hung in the court of this person's comment. But I was still very confused. I didn't mention a product, just asked a question. I never tried to sell anything, other than awareness bands and t-shirts, which according to my understanding of the laws of physics couldn't be construed as a miracle cure. Could it? I was very glad I wasn't in a sensitive mood or I might have taken this ridiculous tirade personally.
But this experience reminded me of one of my most shocking discoveries when I became active in the community, the utter lack of respect many patients have for other patients. It made me wonder if people with other illnesses are this mean to each other too? Does one cancer patient get mad at another because they have a different type of cancer? Or are in different stages at the point of diagnosis? If chemo or radiation works for one patient are they chastised and harangued by those it does not work for? What if someone catches it early enough, has it surgically removed and is cancer free? Are they told they didn't "really have cancer"? If they do all the treatments and do not recover, are they then told they didn't try hard enough? What about the patients who decide to include a wellness approach to their treatment, does a certain sector of the patient body declare them public enemy number one? I can only assume there are far more "miracle cures" out there for cancer than Fibromyalgia. For crying out loud it's a terminal illness! We are not the only ones people try to make a fast buck off of in our time of need. But just because this faction exists in the world does that give patients the right to treat each other with unprovoked disdain and hostility? I don't think so. I have a very hard time imagining a bevy of catfights erupting at a breast cancer walk because not every patient has the exact same experience or responds in the exact same way.
I believe we will get so much further together than apart. We struggle to be taken seriously, not dismissed as depressed or told we are exaggerating a few muscle aches and sleepless nights. Massive differences exist in the patient body. Some are disabled, others work full time. Some got the flu and were left with Fibro, others have five other ailments in addition to Fibro. Not a one size fits all illness here folks! It is with perseverance and unity we will see a change in the way society reacts to our reality. It is with respect towards other patients we can learn and grow to figure out how to make Fibro fit around our lives, not our lives fit around Fibro. And it is with compassion toward others we can find the greatest respect for ourselves.
Thanks for joining,