My frustration with my chronic pain (now diagnosed as fibromyalgia) can be summed up rather well by the fact that Goggle’s dictionary apparently does not include “fibromyalgia”. This seems to be true of many dictionaries, people, & doctors. Which is especially frustrating when you consider that I’ve lived with this constant pain (and a host of other related issues) since I was in high school, possibly before. High school is when I started realizing that my pain was not normal & trying to find a solution. I saw a chiropractor two to three times a week my Junior & Senior years of high school. He ran electric current on my muscles & adjusted me before I went to my first class. I learned to meditate & refocus myself to partition off the pain & exhaustion I felt. I was constantly stretching to alleviate stiffness. I was put on antidepressants & sleep meds & hefty doses of pain killers ranging from Motrin to Vicodin. I did elimination diets & allergy tests. I got massages.
It got me nowhere. Well, almost nowhere. I did figure out that gluten was an issue. That was actually pretty simple for me – if I ate gluten I felt worse than when I did not. It was not so simple for my doctors who refused to test me for celiac or even a wheat allergy. That was the first time I realized that I could trust myself more than I could trust doctors.
I’m not disparaging physicians, mind you. They are doing the best they can. They have to bow to insurance companies & malpractice suits. The schedules they must keep are ridiculous. Sometimes their hands are tied. Other times though, they just don’t want to listen to a bitching teenage girl. And so I learned to trust myself & my body. Unfortunately I also learned to distrust the healthcare system. I spent the next 17 years floating from one physician’s office to the next looking for answers & someone to listen.
Eventually nurses, & therapists, & friends began asking if I knew anything abut fibromyalgia. Not once did a doctor investigate that possibility (until now) or even bring it up.
It’s been a hard year. My “normal” emotional roller-coaster was fed steroids & developed a Hulk-like rage complex. My symptoms got much more severe. I was crawling (sometimes literally) out of bed each morning feeling like an octogenarian that had been struck by a double-decker tour bus. I was crying in the shower everyday because the water hitting my skin hurt. And I couldn’t let go of any of my responsibilities. There was no rescue, no relief. My already over burdened support system fell apart, only a few pylons left poking out of the murky waters to cling to and save me from drowning.
And then the heavens parted. I found a doctor who 1) believes fibromyalgia exists 2) believes that I have it 3) immediately started me on treatment, and most importantly, 4) recognized, acknowledged, & is trying to navigate my frustrations, fears, & bad experiences. He’s a unicorn. He’s my unicorn, my life boat, my only hope, my Obi Wan.
But even with a word for my pain I still have to explain it & justify it & defend it to all and sundry. Including Google’s dictionary.