Coming out about anything that might be viewed askance, misunderstood or dismissed is risky business. This is especially true when revealing whatever is being revealed can have negative consequences.
The same goes double when health conditions are involved; triple when it's a "hidden disability." (Dear God I wish I had a buck for every time I've been told, "But you don't look
sick.") For this and other darn good reasons, I have only recently
begun talking publicly (i.e., on Twitter) about my adventures with fibromyalgia. I was diagnosed in 1986.
I finally agreed to write about it because I was persuaded to do so by healthcare communications colleague, Christine Kraft, MS, who has been producing personal stories in the health space for more than 15 years.
My Fibromyalgia Story
I prefer to call fibromyalgia a “total pain,” and I mean that quite literally. It’s inconvenient to have and nearly impossible to describe without sounding nuts. When I was first diagnosed in 1986, it was called fibrositis and considered nearly completely bogus. A lot has changed during the past 20+ years.
These days, rheumys (i.e., rheumatologists) and neuros (i.e., neurologists) tussle a bit over who “owns” fibro. Endocrinologists have been known to get involved. Back in the 1980s, few doctors were willing to consider that the long list of diverse symptoms might add up to something real. There weren’t any support groups. How could there be? Fibromyalgia didn’t exist as anything other than what’s charmingly known as a “garbage pail” diagnosis.
Thanks to crappy health insurance, I ended up with a young primary care physician who didn’t dismiss me as either a 19
th century neurasthenic or a 20
th century neurotic. He took my debilitating fatigue and chronic pain seriously, possibly because a pack of practitioners had already ruled out lupus, multiple sclerosis, Sjögren’s Syndrome, and the Epstein-Barr virus. Specialists had already treated me for IBS, hypothyroidism, hypoglycemia, Lyme disease, and intestinal parasites, but I was still a physical wreck. What could possibly be left?
Believing the tender point test had diagnostic validity, this courageous doctor proceeded (without ample warning) to apply gentle pressure at each of eighteen points on my body. I threatened to slap him if he didn’t stop. I guess that cinched the diagnosis.
Finally, a Diagnosis
“You have fibrositis,” he said. And the treatment? Nothing. He thought dancing might be helpful.
Over the years, I’ve tried hatha yoga, changing careers, walking,
lectio divina, a vegan diet, choral singing, and gardening. I
wrote books, got divorced, moved to a house without stairs, went back to eating red meat. I served nearly seven years as a
personal aide to a woman with quadriplegia which got me thinking about disabilities that are hidden as well as those that are visible. It’s hard to tell which activity, event, or commitment has delivered the most relief from physical pain and emotional exhaustion.
Medications for Fibromyalgia
Of the medications developed for fibro, I can take exactly none of them. They turn me into a zombie, and not in a trendy, cult kind of way. I did enough digging around on the Internet to gather enough information to convince one physician’s assistant to try an off-label use of one drug; that worked for a while.
Three years ago, I found a Phase I clinical trial (that I didn’t get into) testing vagus nerve stimulation to alleviate fibro pain. Surgically implant the thing on my face if you have to, I told the principal investigator. We hear that a lot, she said. I was excluded because I’d been in a car accident. Some clinicians suspect fibro may be caused by physical trauma; others think it might eventually be traced to a virus.
Read any list of symptoms, exaggerate them exponentially, and that’s usually what I’m feeling. On good days, I stagger around with what feels like the flu. On worse days, every cell and nerve ending feels like a tiny flickering flame igniting over and over and over again.
I Do As Much As I Can
After all these years, I basically try to ignore all of it. I do as much as I can, sometimes more just to make a point. Still, I’ve canceled travel, meals, movies, visits, meetings, and even physical therapy at the last possible moment because I couldn’t sit, stand, or walk. I’ve abandoned shopping carts because it was either do that or not be able to drive home. My daily schedule must include napping, which is one reason I had to stop working in other people’s offices. I also can’t tolerate their lighting, HVAC systems, or noise.
I Am Not My Condition
Although fibro now seems to be recognized as legitimate, I don’t talk much about my experience.
This is, in fact, the first time I’ve written about fibromyalgia. I’ve had my reasons, mostly having to do with how long I’ve lived with it. Being sick of it has finally eclipsed being sick from it. Would it be too much of a cliché to insist that I am not my disorder? Let’s just say I’m determined not to be, even when this always-existing condition almost persuades me otherwise.
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Advocacy is a word that I am using broadly to characterize this work for which I did not go to school, this proclivity for all things health care related, for fostering the patient voice in medicine. This isn't about waving around a colored flag and issuing a list of complaints. This is about getting elbow-deep in the quagmire of policies and prejudices to search for answers that can help change the system. This is about listening, analyzing and doing. This is about the Kingdom of the Unwell and the Kingdom of Healers laying down arms to unite as the Kingdom of People.
