Pain and the panopticon

This past month marked my third gender-affirming surgery. And while it was the third, it has certainly also been the most complex and the hardest recovery. It is also the first one where I experienced complications that had the potential to be severe, including life-threatening blood loss requiring blood transfusions, and with that has come an enormous amount of pain, far in excess of what I anticipated.

Five years ago, I started a second master’s degree in public health, which I finished just as the global pandemic kicked into gear in 2020. Early in the first semester, it became clear to me that at a school of public health, I was actually in the extreme minority of students for whom hard drugs were not a theoretical exercise.

Only one other person knew someone who had died of a heroin overdose; few of my classmates had known and loved people who used injection drugs. This created an uncomfortable tension magnified by repeated expressions of clear internal biases, with phrases such as “the kinds of people [that use drugs]…” that came up many frustrating but illustrative times throughout the 2-year program.

The university medical campus sits directly in the center of an area of elevated injection drug use, constantly being targeted by police sweeps. Across the street from our classrooms, police shook down homeless people suspected of using drugs outside of a local suboxone clinic. This culminated in the now-infamous “Operation Clean Sweep” which showed local police throwing the wheelchairs of suspected users into dump trucks and crushing them for fun..

Since the crisis was at our front door, we talked about it in every single class. Some students even argued that narcotic pain medications should be abolished altogether. (I don’t know this for sure, but I suspect they’ve never actually personally needed them.)

The story of the opioid crisis is roughly as follows: at some point in time, Purdue Pharmaceuticals, owned by the Sackler family, created OxyContin (a preparation of oxycodone, an opioid class analgesic), which created a cascade of addictions amongst primarily blue-collar workers who couldn’t afford to take time off for bedrest.

Purdue’s choice to downplay OxyContin’s addictive capacity by comparing it to the much stronger drug, Dilaudid (hydromorphone, approximately 2.75x stronger than oxycodone) lubricated the gears of otherwise cautious prescribers who were led to believe this was a less harmful substitute. Many patients, after their prescriptions ran out, sought street narcotics like heroin for relief. A not-insignificant number of these former patients developed devastating addictions, losing their jobs, families, and often their lives. The market demand for stronger and more potent opioids soon exploded. This led to the rise in underground fentanyl manufacturing, as well as the current demand domestically for high-potency but extremely dangerous drugs like desomorphine (aka krokodil), which is now making its way through Hartford, having originally seen a heyday 7 years ago in Russia and the Ukraine.

Did OxyContin invent the opioid crisis? No. OxyContin catalyzed a crisis that had been happening in poor non-white communities for a very long time. What was different this time was the relative whiteness of the new face of the crisis. The media softened as teachers, contractors and police officers began getting hooked, not to mention huge numbers of soldiers coming back from combat. Those returning from Afghanistan and Iraq were also coming from regions replete with poppy fields and synthetic drug labs after the enormous destabilization resulting from the ensuing wars and subsequent bloody battles for land.

As it should, public health demanded an immediate response, and one of those action steps was to dramatically cut down on access to pain management for a large number of patients. Those with disabilities and chronic pain suffered the most, and continue to do so to this day. Standards were set that were not based on research but presumed need— which is to say, an educated guess about the amount of pain someone could possibly be in, and what would be excessive for the given procedure they went through. The past three presidents have instructed the Drug Enforcement Agency to be rigorous in its pursuit of errant prescribers. This has created a culture of fear which appears to have incentivized physicians to unconsciously downplay patient pain, or to pursue inadequate pain management for longer than clinically necessary to be able to demonstrate an adequate trial of less potent drugs before approving narcotics. Research shows that the hardest hit among patients seeking relief for non-chronic pain were Black patients who consistently receive half or less than their counterparts in hospitals reporting the same level of pain.

But this also created a shortage of people who felt comfortable in the role of prescriber. In larger hospitals, Acute Pain Services have been overrun, as specialized training was seen as essential to diagnosing legitimate pain. *

* As a point of clarity: the people who work on Pain Teams are heroes, and none of what I’ve written is in any way meant to denigrate their incredible work, but rather the way the political machine has conscripted them away from their mission of helping those in severe and chronic pain, one of the most important fields of medicine. They did not create this problem, and are frequently overwhelmed with the consequences of public health’s mismanagement of the crisis.

But how do we decide whose pain is legitimate? And how do we as clinicians really, honestly believe we can intuit the somatic experiences of people living in bodies in which we are not, having undergone illnesses and surgeries we have never experienced? Why do we still tell women that IUDs are “going to pinch a little when they go in”, when they’re so extremely painful that some patients pass out or vomit? Can we infer something from the fact that gynecologists who have uteruses are less likely to participate in this charade than those who do not? I think we can. I certainly have no business telling someone how much an IUD will hurt.

And yet in medicine, we constantly forecast patient pain well into the future. Typically this is phrased in the form of what medications can be used to manage the pain, with the most common shorthand for mild pain being “all you need is ibuprofen”. And often that’s true, but it isn’t always, and when it isn’t, power imbalances in the provider-patient relationship can become silent battle lines.

While this tension has likely always existed, the official response to the Opioid Crisis has led many providers to see every patient as a potential addict, and many patients to see every doctor as a potential obstacle to relief. Thus adversarial relationships generate spontaneously unbeknownst to those involved, with each party feeling defensive, unsure precisely why.

So perhaps a better way to look at the dance described above would be to say that patients are given not normal estimates, but normalizing estimates; that is to say, estimates of potential pain that are designed to set the expectations of what sociologist Erving Goffman would call “the scene.” The terms of the scene dictate that later in the performance, the patient will report receding pain that responds to milder analgesics. In gender surgery, early on in the process, an expectation is typically set that the pain management “performance” concludes at the initial postoperative outpatient visit.

But this can have a myriad of unintended side effects, including a silencing effect on patients who report later that they felt they couldn’t rate their pain as high as they felt it deserved, as it was too outside of the expectations set before surgery. I’ve known many people who suffered severe complications because they didn’t report acute pain specifically because they were instructed that the pain was normal, without ever being asked about their subjective immediate experience of that pain.

This is amplified by the reality that other providers are explicitly expected to support their team members. However, as Goffman would point out in his “teams” chapter, this poses the possibility that the patient is not actually part of the care team after all. If a unified front is maintained among providers, the patient alone sits on a separate team— the lone voice able to disagree, but with the least amount of power to do so.

The stories that follow us.

I’ve been on anxiety medication since I was 11. Every time I see a new provider, we do a little dance during med reconciliation. And each time, in response to at least one symptom, I’ve been told it’s “probably anxiety.” There’s no known mechanism by which anxiety is capable of breaking a limb or causing a cyst anymore than, say, influenza is capable of growing supernumerary digits, but the chart effect— the preconception of who I am as a person and what I need for care manufactured by the medical record before I meet a provider— has only worsened since I’ve been a gender patient. There’s even a name for it: Trans Broken Arm Syndrome.

The first physician who consented me to HRT used to roll his eyes when I told him how much spironolactone made me have to urinate. I told him I felt a constant sense of urinary urgency and that if there was any way he could address that, it would be really appreciated. To my astonishment he claimed that “excessive urination is not a side effect of spironolactone”. When I pushed back and explained that I couldn’t make it through a movie without going at least twice, he said that was probably my anxiety. When I pushed again, he vindictively suggested perhaps I had prostate or bladder cancer, and ordered bloodwork which came back predictably negative.

Actually, spironolactone is a diuretic, designed to pull fluid from your body. In particular, it was developed to pull fluid from the heart to prevent congestive heart failure, but it’s actually not very good at this. What it is good for, is suppressing androgens. This has also made it an increasingly popular treatment for reducing excess body hair and acne caused by Polycystic Ovarian Syndrome. It’s also good at making you have to pee all the time. It is, in fact, despite my ex-PCP’s assertion, the single most commonly reported side-effect of this medication.

After anesthesia: enter the panopticon.

I woke up from surgery at some point on a Wednesday, a little over 8 hours after going under. A massive dose of propofol was keeping me comfortable and I slept most of the evening. At some point the following day, as the steady intravenous drip of electrolytes, antibiotics, and analgesics began to fail in stopping breakthrough pain, a hydromorphone PCA was added. With it, came the instruction that I could press it at any time and receive what’s called a bolus dose: a short-acting concentrated dose of medicine for acute pain. Whoever sets up the PCA enters a maximum dosage and a time-lock, which prevents overdose and creates a cap on the amount of narcotics that can be self-administered. In my case, the PCA button glowed green when I was eligible for more relief. When I pressed the button, I would hear the soft whirring of pumps and usually soon after I would be able to stop clenching my teeth or squeezing to death whatever was in reach from the pain.

But very quickly I noticed a phenomenon I’d seen as a medical social worker: People in extraordinary amounts of pain, with a button at the ready to push heavy pain medications into their bodies were frozen in space, paralyzed by the decision. The function of a PCA is to allow only the needed medicine to make it into the body, with the theoretical hope that this reduces unnecessary administration while still maximizing coverage. In fact, PCA dose settings are calculated under the assumption is that anyone in continuous severe pain will press the button regularly without hesitation, keeping the medicine flowing and the pain blocked.

Michel Foucault observed in 1970 that the modern penitentiary dramatically reshaped the behavior of those incarcerated within it. The “supermax” prison he observed used a circular design with multiple levels, such that each prisoner is in sight of at least one guard at any given time. The institution itself encourages the belief in the omniscience of the prison, and this in turn means that the majority of actual policing is done by prisoners of themselves, under the belief that in the absence of such preventative action, harsher penalties will come down from the guard tower. Foucault called this the Panopticon, a system of surveillance whereby one internalizes the rules of those with more power, and enforces them without thinking or realizing they are doing so.

Yet, holding the PCA button in my hand, delirious from surgery and nearly anemic from a dangerously low red blood cell count, I found that most of the time I just couldn’t press the button.

It wasn’t that I didn’t want to— when I did do so, I felt better. Sure, the room started to melt a little and I forgot words like “television”, but it worked and the relief from the medicine meant that my whole body relaxed, and with it my pelvic floor spasms stopped. I was able to stop crying. I could get the sleep I desperately needed. And yet, for every 1 time I pressed the button, there were at least 5-10 that I deeply needed to, but couldn’t.

When I puzzled it out I realized my own internal cognitive process was the same I’d heard before from others: I worried that if I pressed the button too often, they’d see me as a someone who uses pain medicine too liberally and therefore is at risk for addiction or simply just trying to enjoy myself, which might limit my future possibilities of receiving adequate pain management, especially after discharge.

And yet, by the logic of what I’ll call the patient’s pain predicament, I couldn’t not press the button, either. If I didn’t press the button, not only would I stop being able to take anything but shallow breaths and my body would clench up like a vice grip, I was equally afraid that if I didn’t use it, they would decide I didn’t need the pain management after all.

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And thus it was that every time I was asked to rate my pain I would study the Universal Pain Assessment Tool on the wall in front of me, a combination of the Wong-Baker FACES scale and the Activity Tolerance Scale. Picking a number provoked a form of social anxiety I’d not felt before in a very long time— I was afraid to fail the performance of my role as a patient. Finally, after a day of scream-inducing bladder spasms where my legs flailed like I was possessed, and after they had to catheterize me wide awake like a human juicebox, I finally started pressing the button as soon as it turned green. And finally I slept.

But as I nodded off to sleep, I wondered about the button. I wondered about the pain, and about how I was perceived as a patient. I thought about my time a decade ago as an early-career social worker, listening to colleagues give hot takes about patients who take a specific psychiatric medications, and about how I’d once pulled a bottle of that medication out of my bag, slid it across the desk, and asked “like these?”

And I wondered about patients at other hospitals. Or those who don’t speak English, who cannot read, or patients with dementia. In short, all of the patients who don’t hold all the enormous privileges I do as a white person with pale skin, financial stability, and 4 years of graduate education in two health-related fields.

I wondered about my fellow trans siblings as patients, many of whom disproportionately struggle with homelessness and addiction relative to their cisgender peers. And I thought about all the Black men whose request for better pain management prompted not nurses but security and police.

Yet with none of these obstacles in front of me, navigating my own pain management was a terrifying process full of hypotheticals. I felt shame constantly. At many times I became convinced there was a right answer to how much pain I was in and many times I rated myself lower than I should have because I felt that was the expectation. I found myself performing when what I needed was rest.

There’s a final cruelty to the changes made in response to the Opioid Crisis: since hospitals are far less likely to send patients home with prescriptions for pain medications, many have tried to maximize pain management during hospital stays using non-narcotic solutions like intravenous toradol. Many of the analgesics used in hospitals don’t actually work that well taken orally, and few of them offer the same relief when not administered as a solution. When patients are cleared for discharge, the decision is often made based on a patient’s own pain self-report— yet this self-report is based on medications they will likely lose access to the second they leave. And the struggle begins anew.

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Epilogue

I’ve been out of the hospital for a week and a half now, but the panopticon stays with me. The decision to send me home with narcotics was not a unanimous one, but a break in the performance between team members. Members of the team who had watched me stay awake, writhing for 36 hours on end crying into a pillow from a distended bladder, advocated hard for me to have something to take home with me despite the hospital’s reluctance. And as such, every time I take a dose of medication I count the number of pills left before I have to ask for more. And I each time I feel tremendously guilty. When I do ask for more, I find myself unable to stop downplaying my own experience. I want to be a good patient.

When I look into my heart, I have to recognize that what I’m most afraid of is being judged as not worthy because of my pain. After years of clinical practice and school policy debates about pain management— during which there was always at least three students who argued to end pain management as we know it— I had internalized the idea that to feel pain is to fail, and that to ask for help when I’m in pain is to ask others to collude in that failure. While no one in my incredible treatment team created that condition, a society which equates ability with worth will always push those in pain into hiding.

Yes, we are in the middle of a devastating opioid crisis, but we are also in the middle of a devastating crisis of institutionally-induced prohibition that puts those already at the greatest risk for negative health outcomes due to health disparities in an even worse position than when we started. That can’t be where we land. That’s not an acceptable outcome for anyone.

But it isn’t enough to change the policies themselves. For as long as the carceral state puts pressure on institutions, and providers feel the DEA breathing down their necks, patients and healers will be at cross-purposes when it comes to managing pain. And for as long as those making the key decisions about how clinicians manage pain are removed from the pain itself, we will always come short of a truly humane solution.

Footnote: Erving Goffman was an enormously influential sociologist, perhaps best known for codifying the concept of stigma. I refer in this post to an earlier text of his, no less influential, called “The Presentation of Self in Everyday Life”, published first in 1959. In this book, Goffman applies dramaturgical language to everyday interactions, showing how our lives are full of performances— genuine or otherwise— based on how we understand the rules of a given situation. A couple decades later, feminist scholar and personal hero of mine Judith Butler expanded on the idea of “performance” in everyday life to explore the ways gender shapes our lives and behavior.

“Similarly, we learn that the medical profession has a strict code of etiquette whereby a consultant in the presence of the patient and his doctor is careful to never say anything which would embarrass the impression of competence that the patient's doctor is attempting to maintain.”

Erving Goffman, The Presentation of Self in Everyday Life (1959)

References

1. Goffman E. (1959). The presentation of self in everyday life. Doubleday. Accessed August 23, 2023. Available online at the internet archive.

2. Foucault M. (1979). Discipline and punish : the birth of the prison (First Vintage books). Vintage Books a division of Random House.

3. Wall, C. S. J., Patev, A. J., & Benotsch, E. G. (2023). Trans broken arm syndrome: A mixed-methods exploration of gender-related medical misattribution and invasive questioning. Social science & medicine (1982), 320, 115748. https://doi.org/10.1016/j.socscimed.2023.115748

4. Alexander, M. J., Kiang, M. V., & Barbieri, M. (2018). Trends in Black and White Opioid Mortality in the United States, 1979-2015. Epidemiology (Cambridge, Mass.), 29(5), 707–715. https://doi.org/10.1097/EDE.0000000000000858