I was bewildered when people called me lazy. I was struggling to travel and work, yet I was indulging in my passions, namely, writing fantasy fiction stories and dancing. It hurt terribly, but I dragged myself out all the same. Something most “normal” people didn’t do. Yet, what I got was being mocked for the slouch in my shoulders, the exhaustion on my face and my weakness in general. I was the lazy one because I had debilitating pain, lethargy and could not get up early in the morning. The only time I managed to do anything was during my short moments of reprieve from the rigors of fibromyalgia. I would finish as much work as I could before the inevitable crash was upon me again.
There were so many things I didn’t understand about people. How was I supposed to just “forget” that I was in pain? Why was stating a fact considered negative? If it’s indeed “all in my mind” as people say, do they expect me to erase it in a second like a magician?
I fought for acceptance. It seemed the sensible thing to do was to lay low and pretend I was fine, but I could not. I confronted and protested every single time. I couldn’t and didn’t want to pretend everything was fine. My life was compromised but it wasn’t the end of the world. I did not think that acknowledging my illness meant I was “giving it power.”
People kept telling me I was lazy, useless and just didn’t want to work. My pain was brushed off as “all in the mind.” Yet, people’s failure to understand me pushed me even more to describe my pain with more detail so that people would understand exactly what I was going through. I thought that perhaps if they understood the degree and the nature of it, I would be taken seriously.
I was wrong, but using metaphors to name my various pains still helped me deal with it in my mind. I don’t know why, but defining things helps me deal with things. As though I could finally put it in a box and keep it aside. So instead of pretending the box didn’t exist, I could just walk around it. It made sense to me to work with my limitations to achieve the best results I could. As Dumbledore said, fear of a name increases fear of the thing itself.
Here are some of the metaphoric names I came up with to describe the essence of fibromyalgia:
The Mining Dwarves: This one feels like dwarves driving their sharp metal picks into my bones, looking for gold. Bone pain is one of the most painful types of pain I’ve encountered. The pain just feels so deep.
The Hungry Dragon: I visualize this one as a dragon wrapped around my body, sinking its sharp teeth into my shoulder and tearing it off. Yes, it’s just as painful as it sounds. This pain is generally accompanied by a sense of extreme fatigue, as though my energy is being sucked away, leaving my body feeling limp.
The Cruciatus Curse: This Harry Potter reference is the perfect
descriptor. In the books, the Cruciatus curse is described as hot knives stabbing you. And this is exactly what it feels like; knives stabbing at my bones, usually accompanied by some howling. Sometimes, instead of being stabbed my bones feel like they are being carved. This is just as painful.
Barbed wire: This one is simple enough to imagine. Barbed wire encircling my body, the barbs piercing my muscles, very similar to the pain that I call Hook Horrors that feel like metal hooks digging into my muscles.
Wires of pain: This one feels like thin filaments of pain, the network
running throughout my body. This too brings fatigue with it along with extreme sensitivity to light and sound. At worst, I have to huddle in a dark room because the slightest bit of sound or light hurts like a hammer being pounded into me.
Describing it in fantasy terms was cathartic to me. I had moderate skills in art and makeup so I decided to use eyeshadow to make pictorial representations of my pain but I succeeded only in making one so far.
As common with fibro patients, I was caught up with trying to find work, dealing with the pain, nausea and fatigue. I’m proud that I made this one at least. It’s a victory and someday maybe I’ll manage to make many more. I am not ashamed of offering an incomplete project for view. It actually accurately defines the life of a fibro patient and I want them to know they can be pleased about the things they do achieve instead of concentrating on perceived failures.