The Beast Called Fibromyalgia


I have a mental image of fibromyalgia as a mysterious, monstrous creature made of grey fog that curls its fingers around me, pulling me to the earth. Its weight leaves my body feeling heavy, bowed and exhausted. The pressure of its grasping fingers causes pain. It is, visually, much like the fog that seems permanently wrapped around my brain, leaving me feeling slightly separate from the world around me. I’d like to rid myself of this creature, but I can’t see it or name it, so I can’t send it away.

I like things tidy and defined. When doctors and practitioners talk to me about treatments, I like to know exactly what is being done, why and how it works, so the mysteriousness of fibromyalgia doesn’t gel well with my worldview.

I often feel that medical professionals really have no idea what fibro is. When I received my diagnosis, it seemed vague – a kind of “well, we know what it isn’t and you meet these specific criteria, so we’re calling it fibromyalgia.” Sometimes, when I’m reading lists of symptoms, I wonder how real my diagnosis is. It seems it could very well be any number of things…even numerous other things mixed in a pot together. And because my diagnosis feels tenuous, the disease itself seems more mystical and surreal.

What really messes with my desire for a tidy diagnosis is that I have no sense of why or when. I look back at my life and I wonder if I ever felt well. I remember being called “dramatic” at a very early age when
feeling ill. I do remember times when I could do long walks without pain, like the lengthy beach adventures during my time living in Mexico when I was between 8 and 10. But I also remember how painful gym class was at 14. How painful my joints were at puberty. How hard I tried to jog at 15 and how I just couldn’t learn to do it without gasping for breath. How walking home from the bus was so exhausting at 16. I always thought that walk was so far, until I drove it recently. And then of course the mono in first year university and endometriosis my second, which is the marker that my doctor uses as the starting point.

But I always wonder. Was it always there, this sombre cloak? Did a tiny insect bite me and invite the monster in? Was it caused by my excessive worry, or is my anxiety another gift it lay at my feet? Did my lack of fitness cause it, or were my heavy, tired limbs the earliest signs of his presence? Is it something I did, was it happenstance or was it present in my genes at conception?

On my brighter days, I know it doesn’t matter. That fibromyalgia is part of my fabric and I am learning to live within the diagnosis with positivity. But on the darker days I still rail against this fate and feel that if I could just solve the puzzle of the origin of the beast, I could find a way out of its trap – if I could just figure out the why, I could figure out how to escape it.

Those are the days that I spend on Google typing out different search terms, trying to find something to relieve the wide-reaching symptoms that distress me. But I know that I have already spent hours on this pursuit and that my time is better spent on other things.

And so I’ll reach out and shake the hand of the beast, try and get comfortable with him and look for some way we can exist together.

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