Joint pain, health care is a racist, patriarchal clusterfuck, and proxy measures are political as hell: A study I dislike very much, and some ragging on my folks

I spend more time than I wanna admit yelling at NPR while I drive, perhaps evidence that the good white liberals who raised and then disowned me are lodged deeper in my brain than I wanna admit.  NPR liberalism is trash. Like, come back when you’re willing to put anything real on the line, when you recognize that we have more at stake than a (potluck) dinner party anecdote, when you can show solidarity beyond a trendy, mass-printed button that somehow matches your freshly ironed button down shirts. Come back when you don’t just recognize and feel the guilt of your (relative, quantified to anyone who will listen) privilege, but when you are ready to unlearn it, leverage it, spread it across a room you no longer control, divide it amongst people you no longer hope to control, live in the vulnerability that is ceding control you were never entitled to anyway. Come back when your progressiveness isn’t performative, is more than saying the right things, donating your (spare, let’s face it, it is spare and unearned, a gift from history) money to the National Association for the Advancement of Colored People and the National Lawyers Guild (but never your local Black Lives Matter chapter, and certainly never the go fund me accounts of Black trans sex workers, because who knows if they would use it responsibly, whatever responsibly means, as a white construct under white supremacy), listening to NPR.  NPR liberalism is trash.  And my timid, white parents, who are ashamed of me and my difficult questions, and who will tap out of the struggle during the NPR pledge drive because they can only support so many causes at once, and they are choosing NPR; their survey responses are the ones counted and used to represent political leanings in the U.S.

This is a bad segue-way into how we measure stuff, and why measurement is so political.  Also into the story I’ve been yelling at on NPR the most in the last week, mostly because it feels the most manageable, out of everything else rotting away and begging for change in our inequitable world, everything we will keep putting our precious bodies and hearts and minds on the line for, because at its heart, revolt is always about love and liberation. But this story is easy: 

This story begins with a study (read the full study here) by self-described “freakonomics-style” researcher Anupam Jena and colleagues.  Like many of Jena’s studies, the goal was to disprove a common belief, using (poorly interpreted) numbers, in this case the age old truth that rainy weather makes our joints hurt.  According to Jena, this belief is false because, and this is key, people do not schedule more doctor visits (or complain more about their joints if already at the doctor’s) in weather recorded as rainy. So, no one was ever asked if they experience more joint pain when it’s rainy out; but Jena’s team (and by that I mean most likely Jena’s underpaid research assistant or unpaid intern) did look at big data about doctor visits in rainy weather. But no one was ever asked if they were in more pain during rainy weather.

A note about Jena: he’s kinda arrogant and icky-seeming, and reminds me of a guy in grad school I call Spencer F. Worthington The Third. The guy who once asked me what I meant by my statement that my research team would be working from an explicitly anti-racist, anti-ableist and feminist perspective, and then expected me to explain feminist research to him. (I did not.  I told him my base consulting fee, which I made up on the spot and for once didn’t undervalue my labor, and handed him a business card in case he wanted to purchase my educational labor, which starts at $175 an hour. Lesson: have business cards on hand whenever mediocre white men are mediorcing around.)

But Jena, Jena seems way trendy.  He takes some numbers that are publicly available in big data sets and runs what he thinks of as “surprising!” “quirky!” and probably even “whimsical!” analyses to “disrupt!” standard thinking. He blogs for FiveThirtyEight, and is a frequent guest on the real Freakonomics, another liberal-y NPR show.  He’s a physician, but also a classically trained economist (telling, because healing our bodies and commodifying our bodies sound like separate fields entirely, at least in my idealistic anarchist mind). He throws around his Harvard credentials, and seems to have an MD in name only-his interest is not in caring for the communities victimized by Harvard’s wealth grab who seek care at Harvard-affiliated teaching hospitals, but in selling his “quirky!”, “creative!” health economics research.

A note on proxy measures: proxy measures are the technical term when we substitute something else that’s easier to quantify in place of the actual thing we want to measure. In this case, Jena et al wanted to measure joint pain, which is hard to quantify objectively (according to science, perhaps not according to people with joint pain, who do, in fact, know when they are in pain, but let’s go with the science’s routine dehumanization and dismissals for another two sentences). But there are no big data sets (huge databases of things like insurance billing claims or birth records) that include actual pain levels over the course of years, so Jena would not have been able to stay comfortably within the land of faceless numbers to look at actual pain levels.  Instead, he picked something quantifiable and documented to take the place of pain levels-in this case, number of doctor visits serve as a proxy for pain levels.  This is questionable.  Most proxy measures are questionable.

Proxy measure are questionable because people are complex, and its hard to distill our complexity down into a series of singular data points. And it’s even harder when we are looking at documentable actions as stand-ins for the truth.  Like most quantitative (numbers-based) data, proxy measures rarely say anything about the systems of oppression that shape all of our actions, and therefore leave out not just a part of the story, but the foundation on which the story is built.

Like, you can ask how compliant I am with my doctor’s orders to take my insulin and eat well by using the proxy measure of my blood sugar numbers.  You’d be assuming that I’d have good blood sugar numbers if I was following orders, but you’d be ignoring the important question of whether I can afford insulin, or if I am sharing my insulin with an undocumented relative who can’t afford their own, and can’t even go to a doctor’s office safely, now that ICE waits in hospital lobbies. You’d be assuming that  I make the choice to not “comply”, when healthy food is readily and affordably available in my neighborhood, because compliance, and not access is what blood sugar is measuring by proxy. You’d be assuming that either there was no relationship between the physical stress of racism and blood sugar numbers, or that I never experienced the kind of stressful racist interactions that make blood sugar skyrocket; in other words, you, like my parents listening to NPR, would be assuming whiteness as the default, and that is a deeply destructive assumption that fuels white supremacy.

And here’s the thing: proxy measures are political.  Deciding what can be a proxy for what is political.  More than measuring the thing we want to know about, proxy measures give us a lot of information about the people setting the proxy.  Proxy measures are like a bad tinder date with the white supremacy of the research establishment, as well as the individual researcher’s recitation of his match answers. Jena and his colleagues, in this study, are telling us that they believe that going to a doctor and complaining of pain is an acceptable proxy for actually being in pain.  And in this study, Jena is telling us that he either doesn’t see the systems of oppression at the foundation of medicine, or he doesn’t think it’s important. And the fact that Jena, and not anyone in my neighborhood, gets to set the proxies is political as all fuck.  It’s by design, y’all.

Here are some questions a more equitable, less steeped in white supremacy researcher would ask before setting doctor visits as an acceptable proxy for pain:

Who is believed when they complain of pain? This is important because we have decades of hard, cold data, no proxy measures involved, just the truth that educated white people like my parents are believed and given pain medication when they are in pain. But people of color, and particularly men of color, are not.  This goes back to slavery, y’all, when white supremacy had to justify the enslavement of human beings by dehumanizing them, including the heavily pushed myth that people of color don’t feel pain, at least not in the same way or intensity as whites.  This myth was right there in the founding of gynecology, codified as a profession by dr. marion fucking sims and his “experiments” on unconsenting, enslaved women.  This myth remains in play when people of color are in labor in hospitals today, where their pain is often described as “drama”, not, you know, it fucking hurts to give birth. And it is more dangerous for people of color, not because they are physically different, but because they receive shitty, dismissive care that makes light of their reported pain. This myth remains in play in the low, low rates of terminally ill people of color referred to hospice care for pain management at the end of life, the low supplies of prescription pain medications distributed to pharmacies (even chain pharmacies) in communities of color, where everyone is assumed to be drug seeking, and not hurting, the evidence that physicians don’t feel its necessary to prescribe pain medication to people of color with bone fractures or kidney stones, at least not at the rates that they feel it necessary to prescribe pain medication to white people with identical ailments. The myth persists in how medical students believe that the physiological processes behind pain differ by race, and in how they often remain uncorrected, passing on the myth the doctors they will train.

Who trusts their doctor enough to complain to them about the pain they are in? Mainstream medicine is assuming a lot of trust it hasn’t earned from people who grew up in the shadow of gynecology’s founding upon their ancestors’ unwilling bodies. Especially without a major overhaul of everything to ensure that Black and Brown bodies are never again seen as commodities and objects for research? Hint: this overhaul has not yet happened in any meaningful way, and after years and years of clinical and clinical-adjacent practice,  I for one do not think medicine has become more trustworthy. There is yet to be anything like pain justice.

Who is believed when they complain of pain? There’s clear evidence that clinicians view and believe pain quite differently on the basis of gender: women are complainers, their pain is always less than real (especially if their gender is not their only marginalized identity, i.e. women of color).  Clinician responses to pain expressed by trans, non-binary and gender conforming people hasn’t been studied, but I’m willing to guess that quite a few clinicians would view stubbed toe pain in a trans person as symptomatic of gender “dysphoria”, or of any gender affirming hormones they might have taken at any point in their lives, past or present. There is clear evidence that people with mental health-related diagnoses in their chart are rarely believed when they complain of physical pain.  “It must be in your head, dear” is the prevailing ethic, although technically all pain is technically at least partially in our heads, given how nerves and neurons work, the series of circuits leading back to our brain, telling us that yes, that broken bone sticking out of our flesh does in fact hurt.  But many, many people with mental health diagnoses have spent way too long waiting for a psychiatric assessment before clinicians will even consider evaluating, let alone treating, an obvious physical ailment.  You know, to rule out the idea that this case of appendicitis might be psychosomatic, or a sign of psychiatric distress.  And “care” while waiting is often dehumanizing.  And seeking care for pain so often adds a new psychiatric diagnosis to one’s chart, exacerbating the cycle of ignored physical pain that must then be all in one’s head.  Or worse, advocating for pain care often means getting additional labels slapped on your chart, like drug-seeking, non-compliant, aggressive, even.  And those labels haunt you, and are perhaps better to avoid, even if it means avoiding treatment for pain.

Who trusts their doctor enough to complain to them about the pain they are in? You know who experiences more pain than average? Survivors of intimate partner violence.  But survivors of intimate partner violence do not receive any more pain treatment than others, meaning that survivors’ pain is too often under-treated, or not treated at all.  Perhaps because the majority of survivors are female or gender non-conforming.  Quick story: once, while I was still in a relationship where I sustained head injuries on the reg, usually for protecting my dog, but sometimes for breathing funny, I went to see a neurologist because my chronic migraines were increasing in frequency, and because this doctor’s office was attached to my job in such a way that I could see her without my abuser finding out.  He didn’t like it when I saw doctors. But here I was alone in a room with the neurologist, and my voice shook as I told her that I was living with a violent husband who sometimes threw me against our walls so hard I blacked out, did she think that this was hurting my brain? Could it be making my migraines worse? “Let’s not look for zebras every time we hear hoofbeats,” she said, and wrote me a prescription for migraine medication without asking any other questions. Years later, when my brain still felt foggy from the head injury years and my concentration was shot, I hesitatingly shared my history with my new primary care doctor, hoping that she could evaluate me for potential brain injuries.  She asked me if I need psychiatric hospitalization, a reaction that is all too common when survivors tell clinicians about their violence-related pain, and then said nothing else. Unless you count her recommendation that I take fish oil, “for my nerves”, as saying something real, and I don’t.  And let’s not even get started with the way that if one is overweight, any pain they feel is automatically an object lesson in weight management, served with a side dish of shame, a la “your tonsils wouldn’t hurt if you weren’t so heavy”.

Who is believed when they complain of pain? Not disabled people, whose pain is often attributed to their disability, or worse, their lack of “proper” psychological adjustment to their disability, although it remains unclear how exactly an inflamed appendix, for example, could possibly be attributed to one’s blindness. But to the ableist profession of medicine, disabled people exist as experiments, bad outcomes, and “delightful” sources of inspiration.  And there’s nothing that counteracts these horrific stereotypes like an intellectually disabled adult trying to get you to believe that their painful inner ear infection is actually painful, and not disability-associated and therefore to be endured in silent suffering, but treatably painful. Believing them is to believe that their life has value, and they are not just the painful negative outcome.  Which is of course true, but absent from medicine, so much so that it is hard to track how often disabled people visit the doctor for routine sick care-stuff like ear infections, the flu, or joint pain.  Because in medical records, the person’s disability, and not the actual illness that brought them to see the doctor, is documented as the primary complaint, also known as the reason for the visit, or what Jena et al would be looking at when they analyzed reasons for doctor visits. And that’s if they are even believed that their joint pain is real.

How many dismissals or negative notes in one’s chart does one need before one stops telling their doctor about their pain?  We are, after all, a smart species, invested in self-preservation.

And all this is even if you can make it to the doctor, which is a big assumption, usually and especially as fascism and white supremacy continue to rise, unchecked, throughout all of our civic institutions.  That’s assuming you can get an appointment at which to complain of joint pain, that you have insurance that will cover the visit, and a way of getting there, that you have the child care you need to see a doctor, that you can miss work without losing your job (and here’s to you, Massachusetts, a state that calls itself progressive and a paradise-like bubble of NPR liberalism, yet cannot pass legislation guaranteeing sick leave, let alone paid sick leave, to all workers!).  That’s assuming that going to see a doctor won’t lead to your deportation or arrest, that you speak the same language as your doctor, that there is a bus line going from your (red-lined, segregated by design) neighborhood to the doctor’s office, and that, once there, you won’t be too tired to speak up, because fighting the system is exhausting.  Poverty is exhausting.  Revolt is painful, and you know the systems we are revolting against aren’t gonna have our back when we hurt.

So, all this to say that proxy measures are often bullshit, but they are also political as hell.  What have we learned about Jena based on the proxy measures he chose? Is he who we want to go on a tinder date with? (If so, he describes willingness to sit thru that date as a proxy for being “fun!”, “smart!” and “edgy!”.  I do not.) Whose measures and realities does Jena and his colleagues consider when they set proxy measures? And, what could research be like if people on the right side of history were setting proxy measures, far and removed from the white supremacy and systems of oppression that currently strangle science?

And here we are back to my folks, and NPR liberalism.  Listening to NPR vs Fox  is often viewed as a proxy measure for political leanings. But whose proxy is it? Who decided that? Why are no POC-owned news outlets considered as proxies? Could we scientists be measuring the wrong things, and colluding with white supremacy to erase and rename everything that leaves evidence of survival? Because liberalism and saying the right things will never be a proxy for real action or willingness to incur real costs and take real risks.  Politely voiced supremacy in the name of “open dialogue” is still a proxy for straight up supremacy.  And we are coming for supremacy and all its proxies.

Love & Solidarity,

Nechama

http://www.bmj.com/content/359/bmj.j5326

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