some thoughts on relating to pain

So I'm preparing to get in with a new doctor in the VA system here, since I moved across the country. I've been putting it off; it should have been one of my first priorities once we arrived, since I have a disability claim pending that needs a mental health evaluation done, and it's my responsibility to set that up since I canceled the one they set up for me in Oregon. They scheduled it for three weeks after I was supposed to move here, but still. But I've been putting it off, because of the enormous amounts of paperwork, and waiting around, and unnecessary doctor's visits, and driving into an unfamiliar downtown area to meet new doctors who don't believe there's anything wrong with me, that's involved in getting into a new medical system. I really really hate going to the doctor.

Not that VA medical care has been anything but quality. Really, all the doctors I've seen have been good doctors. Its just that my medical reality is so far removed from what normal people go through. Most of the time that doesn't bother me, because I don't live as someone else, I just live as me, so it doesn't really matter what other people go through. But going to the doctor means trying to describe what my life is like, and that brings certain things into focus.

The VA has a standard procedure for checking people in before a doctor's appointment. You're seen by a medical assistant who takes you through a list of questions, mostly pretty standard things, like, do you smoke? do you drink? when was your last menstrual period? are you pregnant/trying to get pregnant? what health issue are you here for? And they take your blood pressure and temperature and so on. One thing that they always ask you is to rate your pain on a scale of 1-10, and I can see how this is supposed to be helpful to them. I mean, clearly you can't tell how someone is doing just by looking at them, and they're trying to set a standardized scale for pain just like for anything else, so that they can deal with it consistently.

The obvious problem is that not everyone has the same reference points for pain. They tell you that 10 is supposed to be the worst pain that you're ever felt, but what if you've never felt severe pain? Not everyone has broken bones, or been burned, or gone through childbirth. So the scale is fundamentally flawed, and they acknowledge that, but want you to answer anyway. I tend to answer based on how my pain is affecting my functionality; my '5' is the tipping point of function, anything less and I'm in pain but coping, anything more and I really need to go lie down. This usually satisfies them, and I think that most of the time it conveys what I'm feeling pretty well.

The thing is, though, that my relationship with pain is so very different from someone who has pain only occasionally, that the whole concept of a scale fails to convey the things about my pain that are most important. I mentioned this to my therapist on one of my last visits to see her, and she immediately assumed that I meant that I just got used to being in pain, that I could deal better with higher levels of pain than other people because I was used to it.

This is true to a certain extent. There are a lot of little aches and pains that I ignore basically because I'm bored of paying attention to them. For example, sitting here at my computer typing, I don't register the aches in my finger bones, the nerve pain in my left shoulder, the twinge in my back, the stabbing at the base of my skull, unless I think about it on purpose- or I move in some way that highlights the pain. When I stand up to walk around the room, my feet burst into pain but it's not an event that I remember once I sit back down. I think that if you felt exactly the way I do now, after not feeling this way your whole life, you would notice. You would think, 'oh, I'm sick', or 'I must have hurt myself without realizing it'. You would call your doctor so you could see if you had arthritis in your hands, or a bulging disk in your back, or migraine headaches. But when you know that your pain is meaningless, that it doesn't herald some damage to your body, you get used to it. It becomes familiar, a non-event.

On the other hand, when pain is your constant companion, it is necessary to control it whenever possible for the sake of your sanity. Some lucky sufferers are able to do this with chemicals, but I am not. My only tool for controlling pain is my behavior. If the way I sit hurts my back, I change chairs, or stand up, or lay down. If the clothes I wear irritate my skin, I change them. If typing hurts my fingers, I stop. If standing hurts my hips and feet and knees, I find some place to sit down. This means I have to pay attention to what my body can tolerate, and react as soon as I can to pains that seem like they might grow. If you're walking down the street, and you stub your toe, it will probably hurt a lot, and you'll jump around holding your foot and make faces and curse. But then the pain will subside and you'll keep walking, and five hours later you won't even remember that you stubbed your toe at all.

If I walk down the street, with every step I take my pain increases just a little bit. By the time it gets to hurt even half as much as your stubbed toe did, I know I better quit, because if I don't it will have consequences for the rest of the day. My pain doesn't go away. I have to pay attention to it, manage it, even when it doesn't hurt as bad as its possible to hurt, because if I don't it will make me pay attention to it. Because pain is capable of making you a slave, drooling and whimpering, incapable of rational thought or memory.