Last year I had to get a root canal. It was a maiden voyage and I was extremely paranoid about the rumors of pain it would cause. My endodontist was amazing and numbed me up to the point that I felt nothing, God bless him! His assistant, on the other hand, was something else. When I told her why I was so worried about the pain, because I have Fibromyalgia, she looked her snooty little nose down at me tipped back in the doctors chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me she worked out every day and just powered through the pain. My thought, You must not have the same kind of Fibromyalgia I have! Luckily at this point my mouth was hinged open in prep for the root canal so all I could do was glare at her.
There are as many variables with this illness as there are theories on what causes it. Nutritional deficiencies, neurological damage, cranial injury, depression, viruses, TMJ, sleep disorders, genetics, trauma, elevated neurotransmitter activity, central nervous system pain amplification, hormonal imbalance, depressed serotonin and/or growth hormone...oh the list goes on and on. Some folks have this symptom, some have that symptom. Some have found ways to get it managed or even heal while others have not. In some people it's so severe they can barely walk and live on narcotics while others go to step class at the gym and work two jobs. And then there are so many other conditions many Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. I am coming to realize the pure range of this illness is one of the main reasons we are so misunderstood. Not only can modern medicine not just poke your blood out of your vein with a needle or scan your brain with some hi-tech image slicer to tell you what is wrong with you, but we all experience Fibromyalgia with different symptoms and varying severity and it has compounded a mass confusion. We the patients cannot even understand or agree on what it is!
Whatever its cause the bottom line is the jury is still out, the clinical basis still in the research and development arena, and while there is a real push for awareness and treatment no one protocol works for every patient. This is the crux of our problem. I wonder if we the patients accepted Fibromyalgia as a cluster of varying illnesses sharing similar symptoms and showed a bit of compassion and understanding to our fellow patients, maybe that acceptance and support would go a long way in showing the world at large what we are going through is indeed real. Let's be honest here, half of what makes this so hard to live with is the way we are treated, and not just by uncompassionate family members and friends or archaic doctors. The way we relate to each other has a huge impact as well. I see a fair amount of judgment in our fraternity towards our own members. Some have found the holy grail that works for them (or what they are trying to sell) and set out to convince the world that if every Fibromyalgia patient just took this supplement or did that exercise or got this treatment then poof, it would be gone. Some are genuine in wanting to share their success. But I know personally when I was in the depths of despair over my quickly disintegrating physical and mental capabilities the last thing I had the patience to listen to was one more anecdotal tale about how if I would just buy some special vitamin or juice or potion I would be cured. Quite frankly, it only served to piss me off. I was one sick girl and vitamins alone were not going to provide a magical remedy to solve my myriad of problems. Like politics or religion, this is not a one size fits all disease.
The reality of Fibromyalgia is the tremendous amount of variable symptoms and degrees of incapacitation are serving to sever us as a community, a community that must stand with solidarity and one voice if we ever expect validation. I believe I know what my particular Fibromyalgia was caused by and have figured out a way to manage it to the best of my ability. But that in no way means every Fibromyalgia patient has it for the same reason, can manage it the same way or will experience relief from the same treatment. The sooner we get on the same page, hell, even just start reading the same book, I believe our cause will come together under the umbrella of compassion and grace and truly further awareness for real. Can we stand together, accept that Fibromyalgia is a diverse illness and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness? Is it possible to recognize my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia, but we all have Fibromyalgia? Would it bring awareness to a whole new level by accepting each other first, and then seeking acceptance from the world at large? I think it would.
Thanks for joining,
This blog was originally published on 9/14/10. I have met many people since writing this, and learned many things about Fibro, and am sad to say the mystery and judgment surrounding this illness still stands. We are making steps, my friends, but they are hard-fought and very slow.