As humans, we want to see things for ourselves—to believe them, to understand them. Even if we can’t see something in person, we want to see pictures of it to really believe it, hence, “I’ll believe it when I see it.” That’s one reason that it’s so hard to believe invisible illnesses like fibromyalgia are really as bad as they’re cracked up to be by those who claim to have them. We can’t show you visible proof of them, unless tears count.
I wish I could somehow capture this life with fibromyalgia in a picture for you. Because, look at me and you’ll see I look quite healthy. Honestly, even I find myself looking at pictures of others who have the same or a similar illness and thinking how okay they look. Even I can’t completely weed that tendency out of myself. But you just have to take our word for it.
This lack of ability to capture fibro in visible form then leads my writer’s mind to try to describe it in the best metaphors I can possibly contrive. To capture it in comparisons that will resonate with your experiences and make you think, Oh my gosh, that must be torture to live with, and actually feel a rush of the experience itself for an instant, kind of like watching Titanic and for a brief moment almost actually feeling what Rose is experiencing.
Yet I really can’t even do that. I’ve compared fibro to a prison, in what I feel is the closest example my mind has produced. But the longer I get to know this disgusting enemy of mine, the more comparisons fill themselves out in my mind. Some of which probably do nothing but drive the illness’s bleakness and complexities home for me more than for those who I pass the comparison along to.
Nevertheless, I’ve mentioned before that there is always something wrong. But believe it or not, I actually am still human in the midst of all this, though it honestly does not feel like it. And I am realizing further why that is. While there really is always something wrong in the fibro sense, things actually do go wrong now and then in a simply human sense. Yes, I still get colds and paper cuts and hiccups. But when I know that every single one of my body systems is affected by this illness, I suddenly find that I have absolutely no sense of what is “normal” and what is the fibro living itself out. And further, what problem is “just fibro” or actually something else wrong entirely?
Is that chest pain just fibro, or is there actually something wrong in there? Is that stabbing pain in my temple that makes me gasp just the brief invisible knife that travels around my body, or the sign of something life-threatening? Is that rush of anger the medicine talking, or am I that hateful? Do I really feel as bad as I think I do, or does everyone feel this way and I’m in fact just lazy? Is it the fibro fog keeping me from being excited about a happy event, or am I really a messed-up person who can’t even get excited for people I care about? And is it the fibro fog making me feel absolutely nothing emotionally right now when anyone else would be panicking, or is there something else entirely wrong with that part of my brain?
How do I know what is “just fibro” and what is “just human”?
And in all of this, I’m finding that fibro has become so much me, and has been for such a large part of my life, that I really don’t even know who I am without it. In every area of my life. In every emotional reaction and lack thereof, am I that animated for real or am I just trying to mask my depression around others? Am I that dull for real or is it just the fibro fog? Am I even awake right now? Do I really even realize that I’m married?!
I really don’t even know if I really know what is going on anymore. Like I am a robot performing (minimal) daily tasks, without all of the real emotion that accompanies living and knowing that you are really living. Kind of like living this life through a window. A cold window in a splintered frame against a blur of laughter and darkness.