OK, this is not something I talk about much. And I don’t think I’ve ever talked about it online. But for some reason, tonight I feel a compulsion to talk about it. Not sure why. But what I’ve learned over the years is to trust these instincts when they arise. So, borderline incoherent, typo-filled screed below the cut.
So here it is: I have fibromylagia.
Well, let’s be a little more precise. I have a fibromyalgia diagnosis. I am not entirely sure that fibromyalgia really exists.
Now, let me be crystal clear about that – because for years and years, people suffering have heard the phrase “Fibromyalgia isn’t real…” shortly followed by “…it’s all in your head.” As if the pain isn’t really happening and moral, intellectual fortitude is all that’s needed to overcome.
The people who say that should have very heavy objects dropped on top of them. Repeatedly.
And since fibromyalgia is usually called a “woman’s disease” (there aren’t enough quotation marks in the universe to put around that phrase), fibromyalgia becomes yet another way to say “Shut up and let me get you some yellow wallpaper.”
So what I mean when I say I’m not sure fibromyalgia exists is that it’s a convenient label for doctors to slap on the situation – and it doesn’t actually tell me anything about what the hell is really going on. But would I like some Lyrica?
No, I would not like some fucking Lyrica. Or Neurontin. Or Cymbalta. Maybe this isn’t something that a prescription can make vanish, you goddamn allopathic, machine-metaphor addicted God-complex fuckheads.
So, call it fibromylagia, call it chronic pain syndrome, call it Harold K. Moskowitz if you like, I doesn’t matter. It doesn’t change the fact that something is simply not working. Sub-optimal, if you will.
It’s been about 20 years or so of this crap. A long time to deal with it and not really talk about it. But really, people usually don’t want to hear about it. Because there’s nothing you can do to solve it. It is, by its nature, a problem that cannot be fixed. And so it becomes tiresome. Zod knows, I’m fucking tired of it.
All you can really do is maintain. Eat healthy, get moderate exercise, and take it easy. Be careful of not overdoing it. Know your limitations, is what they say.
To which I say – do you have any clue what it’s like living in America? There’s no such thing as taking it easy. Puritanisitc striving and self-abnegation is written so deeply into the DNA of our culture, and it’s so unbelievably toxic. I’ve been choking on it lately.
Work, work, work, work, work, work, work. Oh, are you not getting ahead? You must not be working hard enough. You must not WANT IT enough.
Part of it is that I’m actually doing OK – I have a bunch of projects I’m working on, and some of them actually pay money. But every day is a war between “you should be more productive” and “you shouldn’t overdo it.”
Or put another way, “work more” while simultaneously “work less.”
I’m not really sure what the point of this screed is. It’s just that, for a long time my coping strategy was to not push myself. But I’m tired of that, and for the past few months I’ve been making another concerted effort to improve my condition – seeing some new doctors and health providers. Spending a fuckload of money on it, but it seems to be worth it. Thank Zod for myofascial release and trauma releasing exercise.
And it just feels like as part of that effort, it would be good to talk about some of what the experience of 20 year of this has been like. I’m gonna try to write a little more about this going forward. If you have questions, feel free to ask them and I’ll try to answer them best I can.
Going to publish this now before I think about it too much and delete it.