Addressing My Fellow Fibro Warriors
Happy Fibromyalgia Awareness Day!
Happy Fibromyalgia Awareness Day 2023!
When I realized the day would fall on a Friday this year, I knew I needed to come up with something special for the occasion. (Not that we don’t deserve recognition every day of the year) So I hope you enjoy this week’s shell as you luxuriate with your heating pad.
Here’s to hoping they discover a path to healing for all of us!
Webster’s Dictionary defines “fibromyalgia” as…
Does anyone begin their speeches that way anymore? Probably not. Actually, they probably start with, “Google reports that ‘fibromyalgia’ is…” now. (Sign of the times) As if some bland definition from a mindless AI can fully capture what it’s like to exist in a body that loathes every fiber of your existence.
“A disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.” Even the Mayo Clinic manages to defang the condition. It’s just pain. Pain and the occasional mood swing. A disorder—(Hands up if you love hearing that word. That’s what I thought)—not unlike the inability to stop consuming chocolate.
Where’s the attempt to quantify the blinding agony that impairs a body’s ability to move? The complete and total lack of energy, sufficient to even propel an outwardly-appearing-healthy body from a prone position upright? Or the desperate scramble through every synapse of the brain in search of a common four-letter word (not that four-letter word) to avoid the appearance of wanton ignorance in front of peers? Why do the definitions ignore the total destruction of basic human dignity? Likening it to no more than a simple bruise or a night’s lost sleep? Confining it to a category of conditions easily dismissed by the general public and medical fields alike?
Because it defies explanation.
We represent an epidemic of the unknown, the unseen. The nightmare that ravages through our bloodstream and nerve endings does so in the strictest secrecy. No evidence remains of the havoc. We’re rewarded with our faithful trips to specialists, phlebotomists, and ERs with stacks and stacks of results marked with cheerful, “within normal limits” notes. Our images stand out as exemplary examples of normal human anatomy. We are the very picture of health, passing through waiting rooms to the raised eyebrows of those fortunate enough to carry their disease on the outside.
How many hours have you spent staring at your medical records, convinced you could find that one outlying number that would prove the source of your unrelenting torture?
“It’s 0.02 under the line! It means something!”
We construct string pathways like the most amateur Hollywood detectives, connecting random flares of pain to environmental exposures to fluctuating vitamin levels to hours of sleep to food types consumed to platelet counts to solar flares. And grow frustrated when no medical professionals take our theories seriously. (No one with a reputable medical degree ever believes the alignment of the planets is responsible for bad pain days) Our social media is filled with feeds and boards of sympathetic voices and desperate thoughts as wild and varied as our own. The lack of forward momentum in the search for answers has forced us into a desperate quest of our own.
A body in the throes of indescribable agony will always listen to the temptation of a promised cure.
We’ve wrapped the invisible shroud of our illness around us, accepting the label as our due. The absence of a welcoming community (no walks, no bracelets, no rabid fanbase of screaming influencers) has left us content to suffer silently in the shadows. Doctors shrug their shoulders or turn us away, and we walk out in resigned defeat. The loss is nothing more than our due; we carry an impossible unknown in our very genetic code.
But we are not required to become the eternal victims of our life sentence.
Cancers and MS began in the very silence we find ourselves. They carved out their place and earned their notoriety among the research world through constant demand and opposition. Their battle was no different. Yet they refused to accept the closed doors we stare at with bleak eyes. Determined to exist despite the confines of their diseases, they demanded their position at the table.
And we have every right to join them, to earn our place in the search for answers. For a potential—authentic—cure.
You are not a “burden” when you ask for help on a high-pain day. (Or a low-pain day. Or any day) You’re not “seeking attention” when you discuss or share the reality of a ravenous monster chewing on your skeleton. Nor are you “lazy” when you need to take time to recover (especially as it will likely occur after one of these other activities).
You are the face of fibromyalgia, and it appears different on every person. Show it to the world so they can see beyond the neutral definitions provided by numb and blind search engines. Let them know what life is like with a body that does not function.
The world will not change if we don’t demand it. And if nothing changes, we have no hope for a world where we stand a chance to finally confront the nightmare in our veins.