Several doctors, physiotherapists, and sufferers from fibromyalgia have found this article to be an accurate description of living with pain, especially from fibromyalgia. Please feel free to share it with anyone you know who would benefit from reading this account, whether they work in the arts or not. Pain, after all, has no occupation.
He came to visit over fourteen years ago, without invitation. Gradually his presence took over my life and shaped how I walked and talked, even how my brain formed ideas. Certainly my moods and attitudes were always at the whim of his insidious presence. There was no pleasure, no work, no love, no life, no hope without his greedy influence.
Whenever I looked into the mirror to shave, I saw not my face but, instead, his reflection. I could no longer talk of myself and not be aware, in intimate details, of every subtle aspect of his nasty person. Soon I remembered no identity of my own before his arrival and realized that I had become my unwanted visitor. I had become pain.
A severe and silent pain consumes the identity of many, whether in the arts or not, and mine is called fibromyalgia. It’s one of those conditions that people almost know about. “My aunt has that, what is it?” they ask and, although I spend many hours as a writer seeking the most appropriate words, I stumble about, inarticulate, when the cruel tedium of fibromyalgia defies description.
But try this, if you will. You feel physically crazy, hysterical in your flesh, overworked and worn down with constant, unrelenting pain. You feel irritated with the throbbing pulse of pain and it hurts and then it hurts even more. It seems as if your pores want to scream, as if you are burning up, but in no heat of fire. It seems you are being squeezed to the breaking point, yet nothing is even touching you. You feel confused and unable to think clearly. You doubt everything you do.
When asked early on, before receiving medication, how the pain felt on a scale of 1 to 10, I responded, “What number says, “I do not want to live anymore” I wasn’t inclined to bury my pain under a blend of stiff upper lip and faux optimism, especially in a culture where the highest accolade conferred too often on one who suffers is, “He doesn’t complain.” But not everyone shares this dismissive attitude that forces the sufferer into solitary silence before he or she even speaks.
The Russian poet Yevgeny Yevtushenko once told me this: “North Americans are terribly afraid to look like losers and they always pretend that everything is fine. A Russian man will invite you to a pub and confess everything, because we like very much our sufferings, we like to complain. It’s our psychological reality.” We might well wonder why we tell those whose identity is woven through with pain not to complain and thus deny their very right to be.
In truth, it is not the one who complains who is weak, but the one who avoids knowing the suffering of others, especially with the blessing of our superficial culture of perpetual smiles. It’s a fundamental human need to be heard and compassion, in turn, requires the courage to acknowledge the realities of another life -if one is sincerely concerned about others.
I once told a friend with cystic fibrosis, the jazz singer Alex Pangman, that, considering the precarious state of her own condition, I felt embarrassed even mentioning my fibromyalgia. She replied, “Pain is very real to you and there’s no reason you shouldn’t talk about it.”
Living with fibromyalgia means a new social identity, partly because you feel rude to impose your unhappy company on others. Rather than being dismissed or patronized or labeled as something odd, bothersome, or pitiable, you instinctively do the best upbeat persona that your resources allow. You try not to be a ‘downer.’ You become an actor and try to fool even yourself.
In turn, ironically, you are then be seen as one without any pain at all. Not many, without this cursed fibromyalgia, understand why sometimes a pain pill and lying down are necessarily preferable to meeting for coffee. And, even as you seek understanding, there’s always the not too subconscious fear that if you, yourself, acknowledge the fibromyalgia, then you’ll be doomed to its reality.
My fibromyalgia came to be when several areas of my life experienced severe and unchangeable stress at one time. It led to one doctor who, no matter that I struggled to walk, denied the very existence of fibromyalgia. It led to another doctor -one with a doubting and judgmental look I’ll never forget- who, after a cursory examination, reported his dismissal of my pain back to the insurance company by whom he was paid to assess me. It led me to the humane but objective doctors under whose care I now am. They want to hear and to understand, and I’m grateful they do.
From square one, fibromyalgia introduced me to a world of multiple medications, and their incompatible side effects, that keep me going –weight-gain, drowsiness, dizziness, erratic innards, and all. It caused me to give up some dear aspirations, to make financial mistakes, to lose income, to misjudge people and situations, to be dumped by some acquaintances and embraced by others, to lose much sleep, to suffer fatigue, and for several years to crash in depression that still looks over my shoulder.
Pain brutally changes, even destroys, the lives of sufferers and those who try to help them. Fibromyalgia has long made my life as a writer an ongoing struggle. On the other hand, it has given me recourse to the most colourful words for pain. Alas, I cannot share this therapeutic vocabulary, such as pain demands, in a daily newspaper.
“James Strecker of Hamilton is a writer, poet, consultant in human development and in creativity, and author or editor of many books.”