Kelly Davio’s previous Waiting Room columns can be found here.
The health care system I use prides itself on displaying laminated pain scale cards in each of its offices. Whether I’m in the physical therapist’s room with its suspicious-looking cords and pulleys or in my neurologist’s office being knocked upon with a hammer, everybody wants me to consult the pain scale and identify my discomfort with a number.
The card features a range of cartoons helpfully arranged in order of misery. From left to right, the little numbered faces range from chipper (indicated by perky eyebrows) to suffering grievously (suggested by what are either tears or cheek goiters). I make a dutiful attempt to pick something appropriate, but the only intervals on the scale that make sense to me are zero (“totally fine, nothing to see here!”) and ten (“I welcome the sweet embrace of death”). The rest of the rankings are hazy to me, partly because they move by multiples of two, and the jumps between facial expressions seem a little precipitous; somewhere between 6 and 8, the smiley face looks as though it’s been the victim of an alarming crime. Whatever happened at 7 or 7.5, I don’t want to know about it.
Even when trying my best, I’m terrible at sorting out what’s what on the scale. Is a migraine a 4 or a 5? Is a dislocated rib a 6 or a 7? Experience tells me to just aim for something low unless I want a disbelieving look and a furtive note written in my chart. However I feel, I just call it a 3.
As though the pain scale doesn’t offer enough confusing bodily arithmetic, the more complicated I’ve become medically, the more incomprehensible the calculations I’m asked to do. When assessing my candidacy for a surgical intervention last spring, the head of the department at the hospital asked me to tell him to what percentage I’d been debilitated by my neurological disease.
“What percentage?”
I had prepared myself for all kinds of possible outcomes in this consultation. I was ready for anything, from him brushing me off to telling me that I’d need one of the more gross and undesirable procedures for which he’s known. One thing I hadn’t prepared for was performing quality-of-life math on the spot. I didn’t know how to put a number to the way I lived, or to the extent to which I’d adapted, year after year, to a new and inadequate set of circumstances.
I told him, “I have no idea.” He assured me that he just wanted an estimate, as though that clarified anything. At this point, I was emotionally exhausted, and I was frustrated. As I often do when frustrated, I said whatever came to mind.
“I haven’t been able to chew a salad for three years. I can’t teach a whole class anymore. I can’t walk anywhere without falling. I stop breathing sometimes. You tell me what percentage that is.”
He stopped typing away at his computer, swiveled around in his chair to look at me, and smoothed out his tie. “I think you answered my question.”
He performed my surgery three months later.
For a time, I assumed that my reluctance to get behind assigning numeric values to my life had something to do with what the mathematician John Allen Paulus called “innumeracy,” or the “mathematical analogue of functional illiteracy.” As a teenager, I bought wholeheartedly into what I heard so often: girls aren’t good at math (why anybody was telling perfectly capable girls that they were inherently deficient in any academic subject is a topic for another day), and I expected very little of myself when it came to quantifying the world. I freely admit that I am among the people whom Paulus says “readily understand narrative particulars, but strongly resist impersonal generalities.”
I concluded that it was my fault, this perplexity with the pain chart and my befuddlement with the business of assigning percentages to disability. In fact, I took it as a personal failure that I couldn’t grasp the impersonal generalities folded up inside my experience. What did it matter to the doctor, after all, whether I could chew a salad? Why would he care how long I could lecture to a class before I couldn’t breathe anymore? It had nothing to do with him or with the cost/benefit analysis of cutting me open.
Have I been treating my personal experience as too, well, personal? Is it time to get onboard with those impersonal generalities? Maybe. But I’ve found myself incapable of doing so. And it’s not, I’ve decided, that I’ve got such an extreme case of innumeracy that I can’t deal with reality. Instead, I’ve realized that the medical world’s insistence on dealing with patients by impersonal numbers is quite convenient when it comes to treating us as problems, not as people.
This fact came home to me last month while going through the details of a potential new health insurance policy. Here are a few of the insurer’s impersonal numbers: 0 (the amount of benefit a patient is allowed for incurable illnesses, such as the one I’ve got), and 5 (the number of years I’d have to be medication-free before the company would even think about offering me care). Then there’s 6 (hundred dollars per month for a single drug). There’s also 25 (thousand dollars for the donor plasma that’s a standby of treatment for patients like me). These numbers are not impersonal. They are the equivalent of being told to take a running jump off a cliff. They are numbers that hurt.
I think I’ve had enough of impersonal generalities when it comes to my body, my treatment. I’m not going to be able to convince insurers that my life is worth preserving, of course, but I am going to start where I can, with my private war against the pain scale. In this month’s bevy of appointments, I’m forgoing the little faces on the chart. “Do you mind if we don’t do the numbers?” I plan to ask. “Let me tell you what it feels like.”
Tags: kelly davio, the butter, the waiting room
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Man, they kept asking the me that pain scale thing after my kidney surgery, and I don’t know, do people who do that just never experience pain? Do they not know that pain’s primary characteristic is its quality, not its quantity? Or is there just no medical difference between a throbbing pain or a stabbing pain or a pain that shifts around or a pain that clenches up all your muscles or a dull but relentless ache? Are these all the same thing?
AND obviously like 90% of the people in surgery have never experienced the most pain humanly possible so we have no idea what the top number on the scale is! I’ve had migraines that have hurt so bad its made me puke before, but I’ve also never broken a femur, which I hear is pretty bad.
This process makes me so angry because it’s not just isolating illness from personal experience — as though illness could possibly be anything EXCEPT the experience of the person who’s ill — but it’s so thoroughly useless data.
I was in a PT’s office once that had a pain scale on the wall like this one: http://www.mcvitamins.com/pain-scale.htm, which makes WAY more sense to me than “pick a number from 1-10”.
Oh, and on that scale, my kidney stone was between 8-9.
…see, that seems really out of whack to me, because that means I spend at least one day a month at a 7 for multiple hours at a time, and yet the time I really did pass out from pain I do not remember it feeling nearly as bad as the monthly period cramps.
Co-signed to you both. When I smashed off part of my middle finger*, I got the pain scale question too and honestly, it didn’t hurt as much as I thought smashing your finger off might but how would I know? I’m not in the habit of accidentally maiming myself, memories are faulty (even if I was), I wasn’t exactly in a state where I could casually pick the “correct” level, and ultimately it wasn’t relevant to the fact that part of my body was unattached to me.
I guess short of telepathy we all have to come up with these imperfect ways to communicate the level and quality of pain we feel in the hospital, but it’s such a mess all around.
*it’s a long story and I can share in the link round up or on twitter or something in order to not derail
Also pain scales are only partially useful when you haven’t established a baseline for a given patient. Different kinds of pain affect different people in different ways. The identical damage might hurt me less or more than another person. Also, if you’re used to pain, even with a pain scale like the one Sandy linked, you might rate it lower because you’ve become used to ignoring it.
This was so very good. Thanks.
Also, obligatory Hyperbole and a Half better pain scale link.
I gave that pain scale to my mom who has MS and she brings it to all her doctor’s appointments now.
I find the numbers a relief. When I’m in enough pain, I can lose sentence somewhere in the middle, metaphors become mixed or muddled, and there simply aren’t words to express what’s going on. But I can handle “six” or “four now”. I also appreciate that medical professionals being forced to ask about and chart my pain is an INCREDIBLE improvement in patient care, even if it’s imperfect.
But here’s why I’m especially grateful to them:
About a month ago, my partner came out of what was supposed to be a routine procedure, and he 10’d. I have been with him through multiple procedures, recoveries, hospitalizations. He had never gone above an 8 in my presence. The crystal clarity of him giving a 10 was useful, and meaningful, and it instantly kicked me into high gear to advocate for him. Of course I knew he was in serious pain before he said “ten”. But the shared understanding of his history, his pain, the significance of a 10…..
He was in far too much pain to be able to explain it. He was in far too much pain to describe it in emotionally resonant ways to someone who had never met him before. But he could say “ten”, and I could get him the help he needed.
That is really interesting to me! The one occasion on which I was a legitimate “ten,” I was so out of it I couldn’t talk. When they gave me the “rate your pain on a scale of one to ten” business, I just sort of gagged quietly and hoped someone would do something or that I’d pass out and not have to feel it anymore. Having to stack everything against that, well, it’s hard; even major surgery seemed very low on the scale after that horror show.
But what you say about the advocacy aspect certainly makes sense. I do think, however, that the fact his 10 meant more to you as the partner than it presumably did to the medical staff in the room shows some of the serious limitations of the scale.
oh man I HATE when therapists ask me to rate my mood on a scale of 1-10 like it’s that simple. Most of the time I give a random middle number and then sometimes my therapist is like surprised at my answer but really I just made it up because I don’t evaluate my emotional state on a scale of 1 to 10. Also pain is so subjective? Like my 10 might be another person’s 7 depending on what our experiences have been? It’s pretty useless.
I work in medical education, and it’s widely acknowledged that the pain scale is imperfect for many reasons, including the one that braak noted. The underpinning idea is that it’s meant to reflect the patient’s own experience of the pain, which is why many providers/institutions have now moved away from ’10 = the worst pain humanly possible’ to ’10 = the worst pain you could imagine’: that phrasing refocuses it back on the individual patient and away from some unquantifiable (and obviously non-existent) humanity-wide idea of what bad pain is.
These individualised subjective scales work well in some ways, but pain is always going to be mysterious and impossible to describe appropriately. My personal opinion (and I should note that my practical experience is only as a massage therapist) is that it works best to indicate progress over a short-term process and when the same practitioner is working with the patient throughout. So for example, I would trust the pain scale as an indicator much more when I was trying to compare a client’s pain level at the start of a massage to the level at the end, or if I were treating a patient over a number of appointments for a specific issue. I also sometimes use it to assess and track my own migraines, as they often last several days and the level of pain will vary widely over time. But to compare one injury to another, or one migraine to another? Nope. I don’t reckon it works. It also doesn’t work to compare different kinds of pain. Nerve pain? Sharp and sudden and electric. Arthritis? Endless aching. Which of those is more painful? It’s too hard to say. Pain is an emotional negative response to stimulus. It’s not rational, it’s not quantifiable. It doesn’t work like that.
The other huge flaw with the pain scale is that it relies on the patient’s reporting. For example, my father (a chronic under-reporter of pain) almost compromised his entire treatment for a back issue because he would use his own secret and unshared rating system to describe his pain, which according to him, his doctor totally understood on some psychic level. Compound this with the effects of heavy-duty meds and a few weeks of pain-induced sleep deprivation, and his ability/inclination to report his pain appropriately was so compromised that he ended up fooling pretty much everyone (apart from a couple of the RNs who saw more of him) and was about to be discharged a matter of hours later, despite being unable to even change position without nearly bursting into tears. And god love him, my dad is hardly the only one to have issues like that.
So yes. The pain scale: not so great.
I had a wonderful doctor who, after years of working with chronic asthmatics, learned to add a couple of degrees of difficulty to their self-reported breathing status, because he was used to them under-reporting their symptoms.
Yeah, I’m a physical therapist and I and most of my colleagues describe 10 as ‘you personally would go to the hospital.’ Of course, some patients still tell me 10 or higher even though they are sitting in front of me and not at the hospital, or people will say 4 or 5 when they can obviously barely move so it’s definitely still not perfect. I fully understand patients’ frustration with it, unfortunately many insurances require that we record it. I also ask about the quality of the pain throughout evaluation and treatment as that gives me a much clearer picture of what’s actually happening. I think you are right on the money about it being more useful in an ongoing care situation related to one issue.
Apropos: http://hyperboleandahalf.blogspot.com/2010/02/boy…
Wow I just got back from a terribly impersonal physical therapy appointment and I am so emotionally drained and this was just perfect to read. The space on the form for describing what has been happening was about 2 inches long. And then there was a page full of questions like “What percent of the time does your pain effect your social plans” Well some days I have pain, and others I don’t! Isn’t that important information? The doctor kept cutting me off and then half of PT is being throttled around and I was tearing up and just felt so trapped I don’t know. Just want to be alone now and I am stuck at work.
Ugh. I’m so sorry to hear that. I hope the rest of the day passes quickly and you can find a quiet alone space to be comfortable and do something loving for yourself.
That sounds terrible. I hope your day improves.
I’m sorry! I hate when I have to go back from a terrible appointment to work. And yes, it’s so hard to answer questions like that if someone isn’t willing to listen because it’s not that definitive.
So sorry that happened to you! I hope you’re home now and feeling a little better.
As a physical therapist, I’m really really sorry to hear you had a bad time with your appointment. I hope things get better for you.
I don’t have any difficulty with the pain scale for sudden-onset pain; where it gets tricky is with the kind of thing that creeps up on you, so that you get used to it bit by bit until suddenly you realize, for instance, that wow, this medication you’re taking is giving you an unending stomach ache, but it’s been going on for so long that you don’t even remember what it feels like not to have a stomach ache.
Oh god yes. I consumed an expired health juice drink (godDAMN you for finding some way to mask the smell of rottenness, Sambazon) a few weeks ago before going to bed, and over the next couple of hours I went from “hmm, I’m mildly discomfited” to “man, I thought I already took an antacid / wish I could sleep” to “VOMITING SO HARD RIGHT NOW” …and I’m not sure when I could have placed it at what part of the scale.
I really struggle with the pain scale too, especially with ongoing appointments related to fibromyalgia/CRPS. Part of that is because I got really trained into distrusting my own perceptions of things, so when, say, a doctor told me that “sometimes students have “problems” like this when they don’t want to work” (I had a 4.0 at the time), it really made me wonder if I was literally wrong about the pain I was feeling, like maybe this is just how everyone’s body is. And because I’ve had to push so hard to get treatment, I have this fear of “using up” the high pain numbers, like if I say something is a 7 and then something REALLY REALLY BAD happens. And for questions about how much it impacts me, I always feel bad, because I probably technically could do more before I literally pass out from pain, so I have a ton of self-doubt about whether I’m just being lazy.
Of course, it would also be easier to talk about my pain qualitatively if I didn’t have to give my entire history to the new intern every time, and then have the doctor totally ignore what changes in my symptoms I describe anyway.
eta: one version literally said under the faces “pick the face that looks like you!” and it was like, I am socialized to put on a brave face and not to whine, so I will smile like a three until I actually feel a nine! Or I will get agitated because I am actively trying to get them to recognize that quiet demure me is in pain and no one is listening.
I just wanted to send you gentle hugs, if you want them – I feel that way a lot, too. (I’ve also been diagnosed with fibro and am currently making the rounds of specialists and working with a new therapist.) It’s amazing how “using up” the high pain numbers becomes a thing; I don’t even suffer as much as some folks with fibro, based on Facebook support group stories (hopefully because I’m learning to manage it?), but I still do things like avoid taking pain meds…”just in case” I feel worse later.
I also wanted to give you a big +1 (besides clicking the button) on the bit about being socialized to be quiet and be brave!
On a lighter note, now I’m tempted to draw a pain scale that indicates irritation with having to recount an entire medical history (again…and again). 🙂 Maybe a matrix, with one axis being “how much I hurt right now” and the other being “how much my medical team is giving me a metaphorical headache right now.”
The pain scale is annoying. I went into the ER once for gallstones and they asked me to rate my pain. While I can tell you that, in my experience, a gallstone attack is worse than giving birth without any painkillers, it’s also a different kind of pain than pushing a human being out of your vagina. I think I told them a 7. The problem with the “worst pain you can imagine” is that I can always imagine it being a lot worse so I feel like I’m overdoing it when I pick a number.
I just wanted to send you gentle hugs, if you want them – I feel that way a lot, too. (I've also been diagnosed with fibro and am currently making the rounds of specialists and working with a new therapist.) It's amazing how "using up" the high pain numbers becomes a thing; I don't even suffer as much as some folks with fibro, based on Facebook support group stories (hopefully because I'm learning to manage it?), but I still do things like avoid taking pain meds…"just in case" I feel worse later.
I also wanted to give you a big +1 (besides clicking the button) on the bit about being socialized to be quiet and be brave!
On a lighter note, now I'm tempted to draw a pain scale that indicates irritation with having to recount an entire medical history (again…and again). 🙂 Maybe a matrix, with one axis being "how much I hurt right now" and the other being "how much my medical team is giving me a metaphorical headache right now."
Thanks for this – I love all The Waiting Room columns, and you write beautifully. For anyone who hasn’t read it before, Eula Biss’s essay “The Pain Scale” is a must. I’ve read it about a million times, and it always leaves me breathless. I think you (and Toast readers!) may be able to identify with some of her experiences.
Thank you, Kelly Davio, for your fabulous writing! Sometimes it’s hard for me to engage with others who are sick, but the stuff of yours I’ve read here at the Butter/Toast…it makes sense, and fits into who I am right now. I haven’t found a support group yet (although I’ve got an amazing Team Elysia, to use Captain Awkward’s language), but I feel like I can comment here and it’s safe to be part of the conversation – makes me feel less isolated.
This is the best feedback I could possibly hope for! Thank you, Elysia. 🙂
Thank you, Kelly Davio, for your fabulous writing! Sometimes it's hard for me to engage with others who are sick, but the stuff of yours I've read here at the Butter/Toast…it makes sense, and fits into who I am right now. I haven't found a support group yet (although I've got an amazing Team Elysia, to use Captain Awkward's language), but I feel like I can comment here and it's safe to be part of the conversation – makes me feel less isolated.
Yeah, the 1-10 scale should be preceded by "please describe the worst thing you can imagine" questionnaire.
This is the best feedback I could possibly hope for! Thank you, Elysia. 🙂
As a companion piece to the already-posted XKCD pain scale and Hyperbole and a Half pain scale: http://chainsawsuit.com/comic/2015/05/28/a-revise…