At the Doctor
On going mute, doctors who can't say "I don't know," and my curved (or not?) cervix
A curved cervix.
My first fertility procedure was an intra-uterine insemination, an event where my husband’s sperm would be injected into my uterus through my cervix using a catheter. In other words, I was at the doctor to try and mimic the private act of conception, but better, and without my husband, and situated in a white-walled room on a piece of tissue paper under fluorescent lights. Bottomless and tiny under my thin robe, I waited for my husband’s sperm to arrive in a vial. This procedure is, as you can see, very romantic. After some minutes, the nurse practitioner whooshed in, accompanied by a medical assistant and a medical student. The three of them towered over me, holding clip boards, logging on to the computer, gloving hands, organizing equipment, and in the midst of this activity the nurse handed me a piece of paper, which listed such sperm statistics as “progressive motility,” and “ejaculate volume.” A sperm report card of sorts. What is this, a hot and steamy sex scene from a romance novel? She pointed to one figure, labeled Total Motile Count, and said,
“That’s his number. Any questions?”
Yes, I did have questions. What is the Motility (%)? How Does that relate to Vitality (%) and Progression (wet mount)? What is the Agglutination (0-3)? What does it mean to have a Normal Oval Forms result of 1.0? What should I conclude from the lab technician’s note reading 15 to 18 Round Cells/HPF?
“Um, I don’t think so,” I squeaked. I would Google it later. I, who spoke the very same language as the nurse. I, who possessed a college degree and a decade of practice honing my verbal communication skills in jobs that relied on effective communication skills. I, who spent my workdays negotiating and cajoling and clarifying, who at the time worked in the healthcare industry collecting data on the quality of care provided to elderly and high-risk patients. If any patient should feel confident to speak up, it should be me.
But show me into the office of a doctor and I become weak-voiced and puny and fearful of saying the wrong thing. I retreat into myself, become muted, my courage dissipates like a hot mist. I lose any confidence I possessed just now on the sidewalk, the authority in that white office too great for my opinions to withstand. It would be ludicrous in that context—ludicrous!—to express, perhaps, what an emotionally heavy experience I was presently having, how my sadness was pushing into my skull and out my nose with a sour tickle, how I was wholly focused on not to letting it out. Wanting to cry is not a medical condition, so it is better to keep it as hidden as possible at the doctor.
“Ok hun, go ahead and lie down,” the nurse instructed me. She inserted a speculum, and began trying to push the catheter through my cervix, like trying to thread a flexible wire through a thin tube.
After a few minutes, she pulled the catheter out. This didn’t seem like the outcome we were looking for, so I glanced down at her, silently of course, sucking at the stale air inside my mask, wondering if she was going to let me in on what was happening.
“Your cervix is curved,” she explained. “It’s totally normal, just harder to get the catheter in.”
“Uh-hrmm.” I responded, nonsensically, horizontal and spread-legged on the table. Just a casual discussion with a person who is about to load my husband’s sperm into a plastic device and inject it into my body.
She resumed the effort. By now, the area around my cervix felt raw, like a cat was in there clawing the walls of the fleshy tunnel. Some minutes later the catheter slid in.
“Eleven o’clock posterior,” the nurse dictated to the medical assistant, who entered the information about my cervix curvature into the computer. Hm? I tried to parse the foreign language. Does the female reproductive system have its own complex system of timekeeping? She was inseminated at 11 in the posterior—a late time of course but much better than the early hours of the anterior.
The nurse injected the sperm. She quickly recited a well-worn script informing me that I could resume normal activity immediately and added with just a hint of condescension that staying horizontal would not help with conception, dear. Don’t be one of those foolish women who puts her legs above her head to try and help the sperm along.
And whoosh, the trio of medical staff were gone, and I was once again alone in the silent white box next to a towering ultrasound machine, the questions I should have asked buzzing through my mind. Despair and hope fought for my attention. What an awful experience that had just been. But maybe, just maybe, this was it? Maybe my baby was about to form, literally today, within my body? Released back into that cold solitude, my tears plunged liberally down my cheeks, the fluorescent lights bearing down on me, my dinky pile of clothes folded next to me on the chair. I stayed lying down for a few minutes longer, just in case.
At a loss.
Accounts like mine–this sudden loss of words in the doctor’s office–litter books and articles by patients, particularly those with chronic and rare diseases. It is such a common experience that it almost seems designed into the system. Take the following account, which I came across on patient community The Mighty after writing the introduction above, and which reads so similarly that I may as well have plagiarized it:
I am a litigator and a former public defender in Manhattan and the Bronx. And as the only English-speaking person in my family, I have advocated for countless people in a myriad of settings, including doctors’ offices, but I couldn’t manage to advocate for myself. The minute I walk into any doctor’s office, something happens to my strong, loud mouthpiece, and I become a marshmallow. It’s like a gag is put on me. If I were a superwoman, the doctor’s office would be my Kryptonite.
- Olga Lucia Torres
I am fascinated by this—why the massive shift in character at the doctor? What dark magic exists in that space that seems to zap me of all powers of communication?
In a rush.
A hallmark of the patient experience these days is waiting at length for a doctor who is chronically behind schedule, only to be seen for seven minutes by someone who spends most of the time typing notes into a computer. This awful, completely pervasive rushed experience of medicine is driven in large part by our approach to insurance reimbursement in the US. Medical services are paid for per-service, like menu items, resulting in an entire healthcare delivery system oriented towards providing more services per day. The result is shorter and shorter appointment slots and an emphasis on throughput—healthcare in the model of the assembly line. This approach results in a long list of problems in the American healthcare system, including a profound inability for our doctors to provide effective preventative medicine or manage chronic conditions, both of which require, more than anything, time. And of course, this rush also results in a degradation of the doctor-patient relationship, a loss often mourned by the previous generation of doctors who trained in a time where taking a full patient history, for example, was a much more common practice. It is no wonder that there is little trust or comfort between two strangers who spend five to fifteen minutes in a room together every so often. It is no wonder, therefore, that I don’t feel particularly open and communicative in that context.
But that cannot be the whole story for my complete loss of words at the doctor. Me and that litigator, Olga, we are people who are practiced at pushing for what we want, people who have trained professionally in the ability to stand our ground, specifically in moments when it feels like there’s no time to do so. In my case, I am white and affluent and therefore automatically trusted in a way that many others are not. The deck is stacked in my favor, so it seems I should be able to effectively demand from the doctor a few extra minutes for my questions. This makes the situation even more urgent for people who don’t have my advantages. So what, then, is keeping me from speaking?
But first, more about my cervix.
I did the sperm injection procedures (IUIs) over and over, month after month after month. I wanted a baby from the depth of my heart, but I couldn’t give myself over to IVF (yet). At each insemination appointment, my husband, having given his “deposit” (as it’s called) earlier that day, went home, and I waited alone, shivering in the blank white room, deeply nervous for the sperm report card, which could vary greatly month to month. I had, via the internet, learned how to read it, or some of it. The most important number was the Total Motile Count, the total number of mobile sperm, which was a function of the total number of sperm and the percentage of them that were able to swim effectively. Sometimes, when the nurse handed me the scorecard, my feelings about it again gathered in my chest all at once and made a mass run for my eyes, but I sat stoney-faced—this was a doctor’s office, after all. I lay back, and in went the speculum and then the catheter, and there it stuck wiggling and scratching.
“Your cervix is curved!” The nurse at my second procedure informed me in a Groundhog’s Day moment, “but it’s totally normal,” she reassured.
“Mm,” I said.
Scratch, scratch, scratch. Vroom, it was through.
“Two o’clock,” the nurse dictated to the medical assistant, a completely different direction than the last time. The medical assistant dutifully typed it in.
At the third procedure, the nurse told me that she would start by inserting a test strip to see if my cervix was curved. This was, surprisingly, my first curvature test strip.
“I think it is curved,” I told her quietly.
“Oh, ok!” She said, and inserted the strip.
“Six o’clock posterior,” she said over her shoulder to the assistant, and into the computer went that bizarre information, into a black hole where information went but was apparently never retrieved. The word “portal” never seemed so apt. Oh, I tried to disregard the glaring inconsistency, I did not need a reason to stoke my mistrust in doctors as I prepared for the possibility of IVF. But it bugged me, obviously. Is it possible my cervix was actually wiggling around in every direction? (It is not, the internet said, because cervix curvature is caused by uterine position, and one’s uterus is not in constant motion. Is this true? Hard to say, I am not a doctor.) Was each person using a different orientation of the clock and no one had thought to coordinate? Was it that these clinicians had not learned how to evaluate cervix curvature? Was it that a person simply does not have enough information about cervix curvature based only on inserting a catheter to make an informed assessment of curvature direction? Perhaps in such an ambiguous situation, one should not attempt to document a firm and final answer, one should at least label it as a best guess?
On not knowing.
This, I think, is an essential piece of my baffling silence at the doctor: a seeming inability for most doctors I have encountered to say, “this is a best guess,” or even more importantly, “I don’t know the answer to that,” or “I might be missing something.” But, in my experience, and particularly among medical specialists, it seems a near universal fact that doctors will not admit when something is outside of the boundaries of their knowledge. This is despite the fact that it is frankly ludicrous to imagine that any one person would have absolute knowledge of any subject, particularly the subject of biology, the field of science that is still undergoing the most rapid and foundational discoveries, or the subject of another person’s body.
My cervix example is for the most part silly and inconsequential (which in some ways makes it all the more baffling that no one would admit to not knowing). But of course, this dynamic occurs with much higher stakes all the time. One widespread example is the “diagnostic” category of Medically Unexplained Symptoms (MUS), which is a real, official diagnosis which is regularly assigned to any physical complaints that cannot be explained with some other diagnosis, and therefore are assumed to be psychological. To create a diagnosis for the unexplained and ascribe a reason, that it’s in your head, institutionalizes this same unwillingness to not know. Once patients are “diagnosed” with a MUS, it is often very hard for them to have their physical symptoms taken seriously by any doctor, since these symptoms have already been officially categorized and ascribed to the individual’s psychology.
Maya Dusenbury documents this phenomenon and its historical roots extensively in her book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, pointing out that throughout history we see the same pattern over and over. Unexplained illnesses are attributed to some catch-all “it’s in your head” category, the name of which has evolved throughout the years: hysteria, or Briquet’s syndrome, or somatoform disorders. These categories have always been applied primarily to women. Then, in each new era, inevitably, medical knowledge progresses and suddenly much of the unexplained becomes explained. Migraine, irritable bowel syndrome, fibromyalgia, interstitial cystitis, and a long list of other diseases that mainly affect women have been pulled out of the general bucket of “hysteria” and (more or less) recognized as distinct diseases with identifiable, non-psychogenic causes.
“Yet despite this record,” Dusenbury writes, “each generation of medical practitioners has remained remarkably confident in the theories and technologies of the current era, treating what is currently “medically unexplained” as if it is, in fact, unexplainable—even to a doctor in the future with greater knowledge and more precise tests.”
This phenomenon is obviously dangerous for the many people, primarily women, who suffer today’s plethora of largely unexplained but definitely real illnesses, those that are under-researched but slowly being illuminated with scientific study and data, from chronic fatigue syndrome to post-treatment Lyme to a buffet of lightly-to-moderately understood autoimmune diseases.
Why the profession opts for a facade of certainty is a longer discussion, involving the history of professionalized medicine, the influence of pharmaceutical companies, medical liability and more. Dusenbury takes on that question many different ways in Doing Harm, for those interested in going deeper. Regardless of the cause of the phenomenon, it is a relief to me to name it, because it resolves some concerns I have had about myself: I am not untrusting and mute in the doctor’s office because I am a wuss, or because I am an ornery patient, or because I am a person who is unable to trust. I am untrusting and mute because I am interacting with people who are mostly unwilling to admit that anything about my body lies outside the limits of their knowledge. I would not trust anyone in any context who is unable to say “I don’t know,” or “I might be missing something here, let’s talk it through.” These are foundational building blocks of trust for me, so it makes sense that I have trouble at the doctor.
The terrifying notion of the fallible doctor.
All that said, the doctor-patient relationship is also unlike any other relationship in my life: I am locked into it because, and this is critical, it has benefitted me profoundly. Doctors have already provided me with life saving and life altering care, and they almost certainly will again, probably many times over. I must go back, and I must receive, and to some degree I must trust that what I am receiving is, on the whole, better than the alternative, which is to go without modern medical care (and I do firmly believe I am better off with it). And also, as a human who values her life, I really must be grateful for the care I have received, in some ways indebted in the most profound way to the doctors who provided it.
What a strange situation this is: to be grateful and indebted and suspicious and untrusting.
In some ways, to push this even further, I am being protected by doctors who pretend to know everything. Dusenbury lays out the frightening statistics on misdiagnosis and medical error: an estimated 12 million Americans each year experience diagnostic error, 40 to 80 thousand die each year as a result, and medical errors are estimated to be the third leading cause of death in the United States, following heart disease and cancer. These facts are, I could argue, too terrifying to hold in mind while receiving medical care. What if I experienced every doctor and hospital visit under the shadow of this fact, living front and center in my mind: the damage done to me here could very well be worse than the assistance. That might be unbearable. Returning to my still-held belief that having modern medicine is better than not having it, perhaps the profession-wide collusion to be silent about the bounds of medical knowledge is in fact protecting us from an unbearable awareness of risk.
Well, I tried out the argument, but no, I personally would still prefer honesty. It’s true that full comprehension of the limits of medical knowledge requires me to change my own inherited belief system as a patient, away from a view of the all-powerful doctor, toward a view where medicine represents the still-very-partial catalog of human knowledge, where it can often help us, but also often cannot help us, and sometimes will hurt us. Personally, I prefer the project of making peace with this nuanced reality to the delusion of medical omniscience.
And finally, back to my cervix.
After all this thinking on the topic, I am, today, when at the doctor, still exactly the same. Silent. I have a bit more understanding of the mechanics of the situation, which brings me some peace, but the confident voice here on the page, bolstered by time to think and a quiet room, shrivels and disappears as soon as I am adorned in a robe under those glaring lights.
At my third and final IVF embryo transfer, the round of IVF that turned into my first viable pregnancy, the doctor came into the room with a refreshing slowness and only one assistant. She asked if I had any questions and made space for the possibility that I actually might. She examined the computer as she prepared to insert the catheter.
“My cervix is curved,” I let her know quietly, just in case this would help reduce the time spent scratching around trying to find the path.
“I see that,” she said, looking at the screen, “but everyone seems to think it curves in a different direction!” Impressed at her basic review of my chart, I said,
“Hah, yeah, I noticed that.” She got the catheter in quickly, and once the embryo was placed, she pulled everything out,
“There you go!” She said brightly,
“And also, it turns out your cervix is not curved.”
I’m curious…
Have you experienced going mute at the doctor? If so, have you figured out any effective ways of speaking up?
**Quick head’s up: I am on maternity leave! During this time, my wonderful consultant/collaborator
will be doing some light moderation, so look for her name and please keep supporting each other in the comment sections. After nearly a year of working with Erin to define and shape this newsletter, I am confident that she will bring only the best Inner Workings vibes to the conversation.While I’m offline, I’ll be sharing updated favorites from my archives as well as some new work that I’ve been saving up. I would love to hear what you think, I am hopeful they’ll be a salve in the slow winter months.
And special gratitude (again) to all you subscribers who are choosing to stick with me through this leave. You make this whole thing work and lay the foundation for what’s to come at Inner Workings and beyond. I am sending you so much love.
XO, Rachel
Your quote, “I am untrusting and mute because I am interacting with people who are mostly unwilling to admit that anything about my body lies outside the limits of their knowledge.” Hit me hard. I had been a nurse for over 23yrs when I was forced to retire due to long covid. The timing of my original bout of Covid did not match up with the initial incidence in the US despite boarders not being closed & lack of testing. Reports of Covid being in blood donations & waste water prior to March 2020 did not get the same attention as other news due to its political consequence of a botched pandemic response. Despite having all of the markers & symptoms that have been published, I’m still gaslight by physicians. Their frustration is palpable when they prescribe me a medication for a symptom & it doesn’t work, as if I’m determined to be sick. It was the first time in my life that I was mute & unable to advocate for myself. The added pressure & anticipated trauma of each appointment further shut down my brain. I needed my husband to attend my appointments so he could advocate for me. Side bar- I was also treated much better when he was there compared to when he wasn’t there. That is a whole different topic that needs addressed. I learned to take my voice back by writing out my goals for the appointment. What questions I needed answered & what topics were off limits to help steer the conversation. I also gave myself permission to leave at any time during the appointment if I felt dismissed or unsafe. That was the most liberating part. I haven’t had to use it yet, but I know I can at any time.
My suggestion for the medical community is to look into your practices. There needs to be a balance between efficiency & time to establish trust. For example: the medical assistant who rooms you says, “so no changes to your medications & problems, right?” has already told me they don’t care & need to move on. The easy reflex is to say “no changes” & that is hardly ever accurate. Most people will not remember medications or problems that were documented at the last visit unless asked about each one. Trust can be lost that quick into an appointment.
Thank you for this. I'm a 25-year-old woman, and one of the perils of my adult life has been learning that doctors are human. I have anxiety that presents in weird ways, one of which being that I used to love going to the doctor and dentist as a kid/teenager. When I went to the doctor's office, I was going to be fixed, point-blank. In the doctor's office, I would be overcome by the feeling I now get on airplanes: everything is out of my hands, but someone else knows what they're doing. Needless to say, I didn't have many big health issues as a kid. I also struggled with speaking up for myself, so if there was something bothering me that the doctor didn't fix, that was only because I hadn't told them about it. When I turned 18 and finally told my doctors about all of the anxiety, digestive issues, and "feminine"(?) issues I'd been quietly struggling with for years, I learned pretty quickly that normal protocol was guessing at best and shrugging me off at worst. I'm fine with trial and error, but I so often get the feeling that my doctor feels pressured to give me a clear answer and prescribe accordingly. It would be so refreshing to hear someone tell me that they don't know but we can try xyz, and if that doesn't work, there's always abc.