As a recently graduated behaviourist, I can say that I spent a lot of the last three years looking at semantics. A lot of the time, they matter. The small differences in how people describe things or themselves—those can tell you a lot. I’ve learned to pay attention to tone of voice, facial expression, body language. Something as innocent seeming as a glance away or a finger raised to scratch a nose—those can tell more than a person realizes.
Other times, though, semantics just piss me off. This is one of those times.
Technically, my diagnosis is myofascial pain syndrome. But when explaining it to most people, I either simplify it as “a chronic pain condition” or simply state that I have fibromyalgia, though I haven’t been officially diagnosed with that (I’ll mention it to the doc at my appointment in September, okay? Don’t push me into going to a doctor. It never ends well). Why do I do that? Why do I not just say I have myofascial pain syndrome and leave it at that?
For one, telling most people I have myofascial pain syndrome gets me a blank look. Summarizing it as MPS doesn’t help, because even to me it just looks like a typo of PMS (though I’ve been known to have that, too). To be honest, I can’t blame them; when the doctor gave me my diagnosis, I looked at him vacantly and waited for an explanation. In my defense, it was eight in the morning and I really wasn’t awake—morning is so not my time of day—but eventually, between the quickly thrown together explanation from the doctor and my own online research later on, I was able to figure it out. Myofascial pain syndrome is a chronic pain condition, typically focused to certain areas, that bears similarities to fibromyalgia but isn’t as widespread in terms of pain. They bear some of the same traits, though, such as a tendency to sleep disturbances and so on.
Well, there’s where a problem started cropping up. Not long after I was diagnosed, I began to do more research and discovered that other symptoms I’d had for a while—things I thought were totally unrelated to my sore wrists, since I’d originally been given a carpal tunnel syndrome diagnosis years ago, and planned to ask my family doctor about—could actually be signs of fibro.
This is where it gets easier to just tell people I have fibromyalgia, since it’s a tad easier to understand and I stand a better chance of hitting something familiar in people’s brains. Fibro is something they might actually have heard of, so right off the bat I have a hope in hell of getting some understanding, maybe even some sympathy if they have an idea of what it is. MPS… so much. And trust me, when you have a chronic pain condition, being able to easily explain it and its effect on your life is a pretty big deal. It is utterly discouraging to try to explain and have people either gaze at you uncomprehendingly or say “Oh, that must suck” in that tone that makes it clear they don’t really get it.
Not only that, but while the rational part of my brain knows I could be jumping to conclusions and inflating my diagnosis, another rational part (I didn’t know I was so rational!) of my brain insisted that it makes no sense for someone who isn’t yet 22 years old to be so sore and in pain, not to mention feeling sleep deprived, headachey and who knows what else, so consistently. Since MPS can sometimes turn into fibro, and I had problems with my wrists (but no evidence towards carpal tunnel syndrome or anything else) for years before other symptoms started cropping up, it makes sense for this to be the case here.
This confusion likely could have been avoided, or at least reduced, if the specialist who diagnosed me with MPS had done more than say it’s a chronic pain condition, write the name of the condition on a piece of paper, and usher me out of the examining room. Ordinarily, I’d have stopped him and asked questions, but as I said, morning’s just not my time to shine, and I was already on a bit of a loop with what he’d thrown at me. Damn if I made another appointment, though, because it took way too long to get the first one.
Of course, I don’t like claiming to have something when it hasn’t been medically verified that I do have it. Is this a problem with the common cold or the flu? Of course not. We’re a fairly intelligent race; start coughing, sneezing, feeling achy, and possibly being nauseous, and you can probably safely assume you have a cold or the flu without being called a liar or charlatan. Still, when I get particularly hesitant about the terminology is when I usually resort to calling it a chronic pain condition and leaving it at that.
But when you feel sore and achy every day, it’s a different matter. People think you’re lazy or a hypochondriac who makes it up. That’s why I hesitate to slap so simple a moniker on it. I deal with so much more than that. Headaches. Sleepiness, even when I’ve slept twelve hours. A total lack of motivation to get up and get the day started. Difficulty even getting to sleep. My vision gets blurry. Some of my muscles like to twitch at random. Foil seals on food containers make my life hell. I can’t hold a plate one-handed for fear I’ll drop it.
And now, as six am crawls forward and I find myself having yet to sleep, I find myself wondering: when does being tired often turn into debilitating exhaustion? When does it stop being sleep disturbances and become an actual sleep problem? When does it stop being a sleep problem and become insomnia? When can I stop calling it one thing and finally give it a good, solid label, which feels like the first step to actually having a chance at dealing with it day-to-day?