I put my heels in the stirrups and wait.
My knees collapse together to protect me for a few extra seconds, but I’ve already relinquished control. The half-open gown with the broken drawstring doesn’t matter anymore, neither does the paper sheet that hovers like a bib over my pelvis, barely covering me. I can feel the cold air pressing against my backside on the table’s edge. At least the lights are dim; maybe I can persuade my muscles to disengage.
The knock and the swinging open of the door form one swift movement — there is no break between them for a syllable like no or wait or yes. The paper sheet billows when she storms in, displacing the air and my calm. Though I crick my neck to solicit her gaze, her eyes won’t meet mine.
“Why are you here?” she blurts, looking at my chart.
I know what she means, but it doesn’t come across that way.
Between hearing and speaking, my mind has to hush the conditioned reflex that I am a burden, that I am taxing the system, draining its resources.
I begin to tell her about my newest crisis. Or, rather, about the newest episode in my ongoing crisis — this anonymous illness that masquerades as normal.
I want to sit up to explain properly, but it looks like there’s no time for that.
She’s focused on the height of her swivel chair, on the screen, on getting the settings just right.
Should I pause? Repeat?
I trail off mid-sentence. She doesn’t notice.
“Move down?” she says, the rising intonation barely softening her order. I pick my hips up, scooch down the table an inch, and set them back down. She waits for me to place my heels back in the stirrups and introduces the goopy wand.
She’s done maybe thirty of these today alone. I’m no stranger to them either. But even routine can be triggering. As the wand pokes and pulls, I try to forget, again, about the time I was injured by a misplaced speculum; I’d stared at the ceiling, tears pooling in my ears, while the ER doctor rummaged to find my cervix. She saw me for fifteen minutes and I suffered for fifteen months, my nerves so enraged that I couldn’t feel the floor or sit without burning and tingling.
But my vulnerability is unacknowledged. Everything in this room has been sterilized.
“It hurts there, near the bladder,” I offer her hints, wincing.
She narrows her eyes at the screen and continues clicking the buttons as she probes. Her body language shows signs of impatience, maybe fatigue. Maybe she’s irritated that my right ovary is so hard to find, twisted out of place by this sticky, toxic weed no one will accept to name. Maybe she’s been up all night too. Maybe she has pain like me. Then I remember: I’m not here to understand, but to be understood.
I’ve come to expect this apathy. I’ve not known anything different. Except that brief time I was pregnant. I’d noticed measurable shifts in compassion—tiny gestures—like physicians introducing themselves or receptionists not sighing between sentences or the radiologist turning the ultrasound screen in my direction rather than tugging it close to their chest to hide the contents of my body from me. There seems to be preferential treatment for those carrying a life other than their own. I even felt a hand on my shoulder when I was miscarrying. There can be sympathy when your womb empties, but not when it is on fire.
She steps out and returns with the doctor for his opinion before finalizing the exam. They chatter amongst themselves. I am the overhearer. Her ovary. Her lining. Seems like she has scar tissue.
What if those aren’t my pronouns?
In this system, I am fragmented. I am the only one charting the map between my seemingly disconnected complaints. There is more to me than my ovaries.
At least, there used to be.
The person dissolves in the patient. The whole is broken into parts.
***
I don’t know what spurred me to take him with me; I don’t usually drag my husband along for courage.
I’ve waited months to be seen at this pain clinic. First, my referral fell through the cracks. Then, the appointment slip wasn’t sent in the mail. My energy was sapped each time I followed up.
Before my appointment with the physician, I was invited to a group orientation session. The room was packed with strangers of all ages and backgrounds with one common denominator: the pain that shackles us. No matter our story, we belong to each other. Our contribution to society has dwindled, our dignity is under daily threat. Our quest for a redefined purpose is shared.
For years, morphine has been the only tool I’ve been offered—a band-aid solution, in lieu of a diagnosis. Much like the hormones, it further diminished my functioning. “I don’t want you taking any more of that, okay dear?” an ER nurse once chided me. “It’s addictive and it’s not a crutch you should reach for.” I was blamed for a choice I had no choice but to make. I’d nodded, forgoing the urge to tell her I was not addicted but desperate.
My husband and I are ushered into the doctor’s room.A psychologist is watching from the corner.
I am asked about my symptoms. The doctor grows restless before I even get into the crux of it, while I’m still on my migraines and digestive symptoms. Am I being inarticulate? Did I contradict myself? Am I taking too long? I am worried that this is not going well. And yet, I’ve filled out all their intake paperwork with this same narrative and diagrams depicting my pain. Haven’t they studied my file?
As soon as I cross into gynecological terrain, the doctor puts her hand up. The room is so small, her hand is very nearly touching my face.
I trail off mid-sentence, allowing her new question to overtake my incomplete answer.
“Where is your pain?”
“It depends on the day,” I explain. “I feel strong pulling here and here, but extremely sharp stabs here that make me suddenly fall to the floor, and pinching and burning over here,” I am pointing, on my body, to all the spots I circled on the diagram between my sternum and my knees. “…and heat and numbness radiating into my inner thighs and down my l—…”
I still have to tell her about the flames in my vagina, but she seems uninterested anyway. Her hand is up in my face again.
“What about your neck pain?”
“My neck pain? I…I don’t have any neck pain,” I stammer.
She takes one hard look at me, then at my chart, and frowns.
“One moment,” she shoots up from her chair and heads out the door, the psychologist trailing behind her, leaving my husband and I to stare at each other with widened eyes. I feel like I’ve just been placed on hold, my mouth closing on the words that never made it out.
When she returns, she doesn’t sit.
“I’ve conferred with my colleagues. They all agree that you do not belong here.”
My mouth opens in retort, but her hand waves it shut, the way a conductor silences lamenting violins.
“You say you have endometriosis.” I notice her choice of words, how invalidating they are.
“Endometriosis is a reproductive condition,” she states, “not a pain condition.”
“Actually, endometriosis, even when surgically treated, causes chronic pain and benefits from multidisciplinary ca—”, I speed up my speech to try to make it to the end of my sentence before she punctures it prematurely.
I want to tell her that physiotherapy, psychotherapy, nutrition, nerve blocks, all of which the clinic offers, could be effective pain management strategies in endometriosis. I try to empathize with the fact that endometriosis is but a footnote in medical training, a brief and inaccurate mention of painful periods and a wandering womb. But the patient doesn’t have credentials; no matter how much research I’ve done into this nefarious beast that inhabits my body and mind, I am swiftly discredited. Then I remember: I’m not there to tell, but to be told.
“Medical ethics requires that I discharge you because pain management is not warranted.”
My husband cuts in, looking flushed. “So why do they keep prescribing morphine?! Don’t we have a right to other tools than narcotics?!”
“The referral I have here says you are seeking consultation for ‘neck pain’,” she steers us away from endometriosis.
How could that be? My neck was probably the only part of my body that did not hurt.
“But I wrote on the questionnaires that I have abdominal and pelvic pain! I marked it clearly on the diagrams! Weren’t these questionnaires looked at?!” My voice escalates into an appalled whine. The psychologist in the corner is looking at me with a furrowed brow.
It suddenly becomes clear why the doctor was so impatient while noting my history—she wanted information on my neck, and I gave her information on my uterus.
“It’s not my fault if there was a mistake in the referr—,” I go on, but her voice meets me halfway.
“If you return to your gynecologist and send us a new referral, we may be able to reassess you in time. But still: pain management for endometriosis is not indicated. You must exhaust all other forms of treatment first.”
The space between my hair and back is soaked in cold sweat. I am shaking. There have been too many instances of going home empty-handed, too many years of dismissing or masking my reality. Each one piles onto the unhealed wound of the last.
I follow the frowning psychologist’s gaze to my lap. My hands are clasped tightly, my fingers tugging at the whitened skin beneath them. Right. Go ahead. Make a note. Anxiety. Anger. Dissatisfaction. These words come up in doctors’ notes more often than the word endometriosis.
“You seem very distressed,” the psychologist shares her observations. “What do you do for a living?”
“I’m finishing my PhD in neurolinguistics,” I mumble a little, unsure of the relevance of this question, also unsure whether my unraveling health will even let me graduate.
She nods, as though I’ve just confirmed what she suspected all along. “I don’t think we can help you to your satisfaction… You seem to have very high expectations. Have you tried to learn how to manage your stress?”
I don’t know whether to scream or cry; either would give them the data they need to support their assumptions. There is only one side to this dime; I am responsible for ailing and healing. I am a malingering, drug-seeking non-mother with high standards and insatiable career ambitions.
Bias is blinding.
Finally, we are asked to leave. Reluctantly, we do—drenched and defeated. The system’s goal is to send us away as quickly as possible; it doesn’t matter if our state is worse than when we arrived.
Back at home, I realize that the referral (which I’ve copied for safekeeping) clearly states “chronic RLQ pain” and not “neck pain”.
***
I’ve grown up with the belief that overcoming barriers strengthens our dignity.
My Armenian grandparents fought for their place, both in Egypt and in Canada where they had to rebuild their lives with a single suitcase to their name. Their identity was shaped by the pull to belong and the push to protect their fragile lineage.
Resilience has been the cornerstone of our family narrative for generations, anchoring every choice and every triumph, from the degrees we seek to the gardens we grow. My grandmothers have lived well into their nineties by putting on a brave face and muffling grief with gratitude, their minds willing their body to follow. Their self-worth depended on how they defied their circumstances, how they lifted their chin to hardship. How much they endured.
Their resilience made them worthy.
But dignity is hard to preserve when it is stripped bare.
It’s hard to undo the image I carry in my mind of my grandmother in soiled diapers, her sharp words replaced by piercing moans, her mouth toothless after they misplaced her dentures, her feet bare after they lost her left shoe. To us, she was our matriarch, our pillar. To them, she was the room at the end of the hall they never made it to because they were short-staffed.
I understand that they are taught to keep their distance to avoid compassion fatigue and empathy burnout. But too much distance creates a divide.
Our healthcare system is designed for illnesses bookended by a sudden onset and a definitive cure. It is not for those living precariously on the boundary between ill and well, in a grey zone that is not necessarily benign.
While the system fissures and buckles under the weight imposed on it, patients break along with it. They take up less space in their lives, shedding their identity layer by layer until there’s nothing left. Divesting them of dignity, rather than restoring it, only catalyzes their despair.
But the patient must endure.
***
The sun has sliced the waiting room in two; we choose seats on the bright side. My husband looks as tense as I feel. I balloon my lungs and set my hand on his knee.
The receptionist reassures me: Dr. M. is running a little late, but we’re next.
I saunter over to the clinic’s “miracle wall”—a collage of baby photos and notes from ecstatic patients thanking Dr. M. for rainbow babies he’s brought into the world. I am not there for a baby. I am there with the faintest hope that he will bring me back into the world.
He comes to collect us, grinning, his hand already extended to meet ours.
We sit at his desk in leather seats that are too big for my meekened posture.
As I recount my unnecessarily convoluted history, his knowing nods compel me to share even the details I usually leave out, the links I’ve made while living in my body that could easily be chalked up to oversensitivity.
“I have trouble breathing and projecting my voice or…”
I trail off mid-sentence. He waits, eyes on mine, listening for the rest.
“…sometimes it hits my shoulder or tugs on my knee.”
“Yes, we often see cyclical shortness of breath and shoulder pain with endometriosis when it’s on the diaphragm,” he validates. “It’s not just a pelvic disease.”
He asks whether he could examine me on the other side of the curtain.
“I’m checking first to see if the uterus moves well, or if it’s ‘frozen’,” he says as he presses with measured force. “Adhesions can even displace the cervix, which seems to be the case here.”
In sixteen years and four dozen pelvic exams, this is the only one that makes sense.
“This will be tender. I’m just trying to get a sense of whether there are any nodules pressing on the rectum. Ah, yes, here’s a fairly large one…”
When he gathers enough information from my aching body, he crosses the curtain back to the desk while I dress. I hear my husband thank him, swallowing his emotion between sentences.
“Of course! Anyone can be a patient, even me. I try to think like a patient—and a student—not just a doctor.”
“Kristina? Are you ok?” he calls out to me after some time. “I know these exams can be very painful when there is physical and emotional trauma. I want to make sure you’re all right.”
I pull the curtain back to join them and explode into a mess of tears and sobs.
“I understand,” he comes toward me. “It’s been a real rollercoaster for you. Don’t worry, we’re going to take care of you.”
Image: photo by FlyD, licensed under CC 2.0.
- Stripped Bare - March 22, 2024
Ah. To be sitting listening for a mouse eating chocolate across the room, sets up my senses to fully absorb the verbiage……
It reduces me to tears.
You must get help from many. Do not put up with this monster. Hugs WAHx