Fibromyalgia is one of my diagnosed Health Blahs. I won’t go in to detail here other than this focus – a kind of pain distortion. There’s a neurological aspect of Fibro that allegedly “turns up the volume” on pain. It’s a sort of biological input distortion filter that is described as a stereo having the volume tuned up too high. This is a confusing concept, as people are likely to dismiss my pain, thinking it’s all in my head. But I assure you, the pain is real. And for me, it’s not even measurable, as in, “The pain should only be at a 4, but we can add another two points for Fibro distortion, for a total impact on the patient of 6.”
Whether caused by the immeasurable “volume” increase or actual pain, it hurts just the same.
Because pain is pain is pain is pain.
The frustration is tremendous as what I report to the medical community sometimes gets taken apart and evaluated like most others don’t have to tolerate. “Oh, it’s the Fibro amping up the pain, you’re ok.” Or, “Keep in mind that Fibro distorts the pain, what is your pain level separate from that?”
Okay, how about I ask you, “Knife or spoon? You are going to be stabbed with one, and you get to choose. Obviously, you want the one that hurts the least and/or does the least damage. So, which do you choose?”
A spoon will hurt more but won’t go as deep, as easily. A knife will cut an artery, but how much pain will you feel?
Does it matter?
Sometimes, yes. In my experience, the standard 0-10 pain scale (smiley to pained faces on a chart I’ve seen in every ER and hospital room) works like gangbusters, especially when you have a doctor that will actually spend more time listening than their typically double-booked schedules usually allow.
About a year before that diagnosis, my therapist T-Pain, told me I have distortion filters on things I experience, both input and output, that impact my emotional well-being and create conflict with beloveds. The destructive power of these filters is immense and also far more common than I previously believed possible. Meaning, I’m not the only one with them, I’m just the only adult I know that has had it named (and admits it).
Essentially, I hear things (input) in such a way that I attribute all blame, shame or guilt to myself. All bad things are my fault. I do nothing well, and I am a constant disappointment to those I love or those foolish enough to love me.
It also means that at times I have problems communicating (output). My reactions: awkward, stammering, emotional, clumsy, partial, incoherent or circular in logic. The higher the stress, the worse the reaction.
Over a year ago, when my therapist helped me understand what I’m processing isn’t always what people intended to convey, I was thrilled.
Let me tell my loved ones, I thought, so they may allow me a bit more processing time to ensure that I’m expressing what I intend to express. Communication will be easier. Everything is based on communication, so everything will be easier.
A whole new world promised to open in front of me.
I now call shenanigans. Get the broom.
You see, in trying to leave a better footprint behind me, I have inadvertently opened myself up to having any misunderstanding or differences of opinion can be laid at the feet of my faulty filters. I don’t believe it’s intentionally unkind or dismissive, but it remains extremely insulting.
It’s as if learning that about me gives others some sort of legendary weapon in discussions. After all, it’s far easier to close the issue without examining anyone else’s behavior, because, hey, here’s a trump card that I’ve handed over: “She’s upset because of the way she neurologically processes things, not because of anything I did or said. There, that’s settled.”
It’s become a litmus test for me, finding how different people try or don’t try to connect with me. I don’t even bother telling people about my distortions at this point, since so many people have them but don’t see them or understand what they are or how to start the slow process of disabling them. (Hint: You can do it.)
It’s amazing how much easier your path can seem when you realize many around you are on the same path, trying to overcome their own stuff. Everyone has their own distortions, I’m finding. Since there’s no point in waiting on judgment or acceptance from others, I’mma just keep moving, doing my own thing, my own way. T-Pain says I can’t go wrong.
Call it chasing silver linings. (So fun!)
Call me Little Mary Sunshine. (Mary’s a lovely name!)
Whatevs, I’ll just keep trying to get through life with as much love, bliss and laughter as we can Katamari.
In that vein, check out my adorable Great Niece #2, Baby A. She’s about a month old and I get to meet her next month when Lil Momma (my far off niece) returns with her family for a visit. Oh, the excitement!