On Pain, Knowing Thy Body, and Doctors Playing Dumb

We all talk about pain. I talk, I write. There are certainly people who write about it better than I.* It makes me sad when people tell me their stories and say, “But it’s nothing compared to what you go through.” Full stop, here, folks. Let me tell you my personal philosophy on pain. I do not think we can ever compare our pain to another’s. We can sympathize, and those of us with similar issues can empathize, but one of the things I’ve learned from being in pain is that I have no place to judge another’s. Pain is weird; something that doesn’t bother me will drive someone else insane, and vice versa. And there’s no good way to compare pain–think about the pain of a healing broken arm…imagine having that arm, that ache. And now imagine you also have a cold sore, and accidentally bash into something with your lip. ZING, suddenly you’re like “What broken arm, dude, I’m pretty sure both an Alien and a Predator are clashing on my face right now.” Pain, and pain. And then the later song of the broken arm with the high aria of the throbbing lip. And then you meet someone who just slid their hand into a banker’s box and sliced open every finger on manila folders. DEATH. DEATH PAIN.

We call all of it pain, but it comes in shades and flavors and degrees. When you tell me about your pain, I am not cataloging it against my own. I take your story of your pain, and I hold it, alone, on its own. Your nerve pathways are not mine, they are your own, and if you say that the sunburn felt like being flayed alive, I am sad and cringing and wishing you cool-aloe-and-cotton-sheet feeling. I promise.

You just learn your body, I think, in a different way, with chronic pain because it is always there. I lived in my head before I got sick, and still do to a large extent, but now there is always the sense of body. An undertone of pain. Like cicadas in my head and thrumming in my bones, in the background, if it’s at a 4. Or elevator music that you hum to but aren’t really paying attention to, if it’s at a 5. At 6, the unpleasant pressure of speaker feedback thrumming through bones, distracting. You learn to distinguish between kinds of pain happening simultaneously–with both fibromyalgia and spondylitis, this is both useful and not. Not, because it doesn’t really matter and it’s pain no matter what the cause is. (Everyone knows this at some level. It doesn’t MATTER what smashed my hand what matters is that the hand is SMASHED.) Useful because it lets me know which doctor I need to think about calling, and useful because it lets me know if there’s anything I can do to alleviate it.

So when I have pain that doesn’t fit into my fibro-body-knowing or my spondy-body-knowing, I pay a bit more attention because it isn’t something I’ve managed to turn into background noise. You should hear me cuss when I smash my toes into furniture or doorframes (seriously, why can’t I stop doing this?). I tend to get cold sores/fever blisters on my lip when I get sunburned, and those hurt like the dickens.  Taking an Enbrel injection while it’s still cold, because I didn’t let it come all the way to room temperature is like injecting liquid fire into myself.

When I fell while moving in early June this summer, I knew. First of all, I don’t bend that way. Second of all, my ankle didn’t hurt right away. It didn’t anything right away – it didn’t even ankle. It was like it went offline. Sorry, unplugged, power surge, need a minute, taking a powder. When the feeling came back an instant later, that sucker hurt. I could put weight on it, kindasorta, so Mom deemed it a bad sprain and made me ice it, raise it, stay off it, use my cane. Sprains are notoriously slow to heal, she said, so I waited three weeks to call the doctor. Surely, I thought, it should feel better by now, even a bit. I got sent to an overflow doc, got a quickie x-ray that he put up into the light, said “I don’t see anything, you’re fine” and sent me along. Limp, limp. Another month, then send an email to the usual primary care doc, who says “You have both a joint disease *and* fibromyalgia, of course it still hurts. Sprain. Bad sprain. Fibrospondy it’s just gonna hurt sprain.” Limp along another month, email again, and I can HEAR the sigh over email when the doc says to come in for new x-rays. Naggy patient pain in the ass. Get new x-rays. That was last week.

Yesterday, I get to the office after an early morning rheumatologist appointment where I mention the sickly-hurt, the not-spondy, not-fibro hurt of the ankle, but I don’t mention it aggressively. The spondy itself is out of control, and both the joint pain and my inflammation numbers say so, I do not have to make my case, the normal range is 0 to 20 and I have an overachiever score of 86. I need RheumDoc to focus on that. I do not have to plead. I do mentally close my eyes and pray for deliverance when RheumDoc ups my prednisone. (At least I know this will help with the spondypain, so there’s that.) Driving down to Los Angeles and back plays all hell with the ankle. Funny how it takes longer for it to hurt from walking than it does from those tiny, tiny movements on the pedals. Tiny movements, tiny tortuous movements. Gah.

Anyway. Back from RheumDoc, nursing the ankle. Open the email from the GPDoc. “Actually, it appears your ankle is fractured. I have put in a referral for you to see the podiatrist.” Pretty cold for a dude who fucked up. I have been complaining about this wrong-hurt sick-hurt ankle since I busted it in early June. Tomorrow is September.

And that bitch is fractured.

I do not care that, as my mom says, it doesn’t really matter because they’ll just tell me to wear a boot or cast it, and I cannot function as a single woman in a second floor apartment with a basset hound and bad joints and a later-this-month flight to Canada if they cast it.

Do. Not. Care.

I care that I have been telling the doctor and his minions that something is wrong and they didn’t believe me. Like it wasn’t a thing because since I have pain everywhere, another bit surely didn’t matter, didn’t mean anything. Like they know my body and its signals better than I do.

And Earlier Me of 2010, 2012, 2014 might not have nagged the doc about it, wanting to be the Good Patient, but I am tired. And annoyed. And doing research on women’s bodies for the PhD dissertation I’m working on, there are stories and then more stories about how women’s pain is ignored or belittled or downplayed by a medical profession run by men, based on knowledge largely gained from men’s bodies.

But I don’t need the research, do I? I’m online. I have female friends. When we start to tell stories, they are shades of the same insanity. I hurt, something was not right, the doctor didn’t listen, didn’t believe, didn’t care, made it difficult for me to be diagnosed, believed, treated. (Never a mention of getting our money back, of course.) Oh, I get angry, and oh, I am weary. Ah, Silly Me of My Twenties, who thought she had the world by the balls and that feminism had done its job so what was the big deal? Silly girl, I miss you. Now I am surrounded with fellow women warriors, scarred, scared, and mistrustful of the medical establishment that is supposed to help us. And it brings me to tears to think of the people just learning to be sick, to live with their illness, who are too cowed to nag.

I wonder if the popularity of naturopaths and natural cures (the well-meaning and the insane alike) is due to the fact that the folks marketing that kind of care listen, and listen with compassion, and at least pretend to believe, whether their treatments are quackery or not. (And not for nothing: it’s not a placebo if it works. Say it again for those in the back.) Another thing from the women of my tribe: even if the care remained subpar, just having a doctor listen to us would raise our opinions of them. We don’t even dare stretch into hoping that they’ll believe us.

We’re not crazy, after all.

We’re in pain.

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*I will refer you once again to Eula Biss’s essay “The Pain Scale” for what I think is one of the most true and moving considerations of pain.

One thought on “On Pain, Knowing Thy Body, and Doctors Playing Dumb

  1. I just want to tell you this was a wonderful post! You provided great information! I have been battling Multiple Sclerosis for 16 years and dealt with so much pain. I actually started my blog a month and a half ago and it has been a great experience. I have been able to connect with so many wonderful people that understand what I deal with. I look forward to reading more of your posts. Take care!!!!

    Liked by 1 person

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