The other day, in response to someone's inquiry of how I was, I found myself prattling on about the details of my pain levels and I realized that I often do this with people who knew me well and with whom I speak often. And it's been nagging at me a bit and making me wonder whether I should just shut up about it.
I don't do it because I want pity - offer me pity and I will go medieval on your derrière - and I don't do it because I want an extended conversation about it (because lord knows, most of the time the pain bores me senseless). I talk about it because… well, probably two reasons. The first one is that pain is a very much a part of my day, sometimes muttering in the background, sometimes being how I spend my day and if someone asks me how my day was, pain is part of that. The second reason is that when it’s loud, it helps to say it, to have someone else know.
Pain is a uniquely solitary experience. I can tell you about it, about the qualities of pain and how many pills I took before it simmered down, but it is impossible for you to share the experience. For people who do not have chronic pain, it is purely theoretical - they can't see it, they may be able to remember the day after they first ran 5 miles or that sprained ankle, but if you are not currently in pain, you don't remember what it is like. And pain as invisible. You may be able to see the broken bone poking out through the skin, the blood seeping from the cut or the red and swollen joint and thereby infer that the person is in pain, but you have to rely on their recounting of that pain and how much it impacts their level of functioning.
And I wonder if that invisibility is part of the reason pain is viewed with suspicion from others, including doctors. And why people are supposed to suck it up, have a stiff upper lip and bear their cross in silence. I once read a comment from a user on MyRACentral who wished she could be like someone in her town who’d had a severe case of RA for decades, yet had never uttered a word of complaint and always had a smile on her face and my reaction to that was a big WHY?? So we don't bother other people with our pain? So we can keep the icky parts of illness and disability away from others? Is the goal of all that silence to modify our experience for other people's comfort? And what effect does it have when we modify and diminish and remain silent? Is this why people are so clueless about what big, chronic pain requires and so many are persuaded that they are a wuss if they ask for pain meds? Or that so many doctors remain ignorant about pain and treatment of pain to the point that they don't treat it? Another user wrote this
My doctor told me early on that if I start with pain meds my body would eventually become used to the dosage and I would always need more. He said I would eventually wind up with a morphine patch or something similar. I knew I didn't want that so I elected not to take pain meds.
And of course, then there are the doctors who choose to remain so ignorant about a disease like RA that comes with chronic pain that another user told this story
The RA dr. does not believe in pain med…. and my GP is going to start reducing my pain med., vicodin 4 x a day because he thinks the meth should be taking over now. He talks to me like I am an addict and is treating me mean … I asked to see a pain dr. and he laughed at me … He says no Dr. will touch me.
And it's not just GPs who can sort of be forgiven for not knowing the ins and outs of RA, but I read story after story about rheumatologists who "don't believe in pain meds," think your Enbrel or your Humira or your methotrexate should be taking care of the pain, because once the RA is suppressed, you have no more pain, right? Except you do, when the cartilage’s been eaten away and bone grinds against bone, it bloody well hurts. And from where I sit, refusing to treat their patients' pain is tantamount to abuse, but they can and they do, because the pain as invisible.
And that solitary aspect of pain is one of the reasons I wish that we could somehow developed a technique for "plugging in" to other people's experience. Can you imagine what would happen if instead of trying to explain, I could just say feel this?
But since we can't do that yet, I'm starting to wonder if talking about your experience of pain can be a political act? Whether it is discussing physical pain, the pain of grief or refusing to sanitize fairytales, maybe stopping the silence would make it less deviant to be in pain. Be less necessity for judging someone a wuss if they talk about their pain. Maybe there would be less social pressure to grin and bear it.
So I think I'll continue to talk about it.
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