Largely Unremarkable
A rant on medical gaslighting, and what the “health care” system has had to say about me.
I come in for appointment after appointment, like a wife that just can’t leave an abusive husband, or a child trying to grow up in a dysfunctional family. Maybe this time they’ll listen. Maybe this time they’ll see me, treat me better, validate me. I keep coming back, because a little voice inside my heart says my questions are still unanswered. I know something is wrong.
Louisiana has offered a whole new brand of mental fuckery to the medical experience. My gynecologist calls me Baby.
Yes, even after three years of specific, dedicated herbal support, the plane was crashing on my journey to menopause, and I just needed some help landing it. So I visited an OB-GYN to inquire about my options. She pushed a prescription for oral progesterone pills across the pale pink, fake marble countertop, promising escape from insomnia, mildly psychotic mood swings, debilitating hot flashes, and possibly even the many aches and pains that plague my joints, night and day.
It’s true that some of those things got mildly better, but in less than a month, I had a raging infection in my right breast. It came out of nowhere. I was walking my dogs and suddenly there was a stabbing pain. A dragging feeling, like something pulling on me from within. Within hours I couldn’t move without searing pain. I couldn’t find a position to lay in that didn’t feel like hot coals were burning through my chest. Then the fevers and flu-like symptoms descended upon me, and even my clothes, even my HAIR hurt.
I called and asked the prescribing gynecologist if there could be a connection between this infection and the progesterone pills.
“No, Baby! We take hormones to make our lives better. There’s no side effects. I take them, Honey.” I threw away the pills and her phone number.
Another infection raged just a few weeks later in the other breast, this one threatening to put me in the hospital with sepsis. I took this warning shot across the bow seriously, and visited a breast specialist.
According to the Interwebs, a case of non-lactational mastitis when you are 48 — a random thing — is not totally unheard of, especially under the influence of hormone replacement therapy. Breast tissue is sensitive, and I haven’t exactly had a stainless history when it comes to strange things happening with mine. But if it reoccurs, scary things like Inflammatory Breast Cancer need to be ruled out.
I visit the clinic, which feels like the Breast Cancer Industrial Complex, and like all doctors in my experience to date, this one talks in circles.
“As long as it doesn’t reoccur, this kind of infection, though strange, can be written down as normal.”
“But….I came to see you because this is a reoccurrence?!”
“Hmmm. Yeah. I don’t know? Take this second round of even stronger antibiotics and seriously rest. Keep coming back every few days for ultrasounds so we can watch that spot that’s trying to form an abscess.”
The next ultrasound entails two and half hours of three different people mashing on me. I writhe in pain and breathe hard and slow as though I’m in labor. (By the way, I’m sorry to all the women who have held my hand in childbirth, and all I had to say was “Breathe,” as a head plowed through their bones). This scan reveals three masses on the right side. Neither of my recent mammograms picked up on these. “Largely Unremarkable. Patient has dense breast tissue which may obscure abnormal findings,” was all it said. “Grossly Normal.”
But this time, the written ultrasound report hits the “MyChart” app, and when I finally figure out my username and password and undergo the triple-verification log-in process, it scares the shit out of me. SUSPICIOUS OF MALIGNANCY is written all over it. This is a new experience. Maybe I am Remarkable, after all.
The next order of business, I am told, is to undergo ultrasound-guided core biopsies to explore these masses. The numbing medication won’t work during that dreadful hour-long experience. The doctor plows ahead anyway. Occasionally she meets my eyes and when she does, she flashes brief smiles at me that do not move any other part of her face. These grimaces resemble an animal bearing its teeth. When she puts her teeth away, her expression is even more severe and focused on the screen above me. Her demeanor puts fear in me. She says, on repeat, with little sympathy, and mostly to the medical assistant, “I’ve given her all I can of the Lidocaine. She’s just baseline-tender.”
Yes, it’s true. I am Baseline Tender. This is one diagnosis I can get behind. One hundred percent, and in every sense. But maybe I’m jumping off the table and squirming as they shove the 14 gauge needle deeper and deeper into my breast, over and over again, while mashing on me with the ultrasound transducer from above, vacuum-extracting samples from the lesions growing within my milk ducts with multiple, jarring loud clicks, because these bizarre, out of nowhere infections are not clearing up all the way? Maybe they’re still smoldering in the background, and they aren’t garden variety infections? Maybe something darker is brewing? That’s what the tiny voice inside is warning me of. And The Google.
Surprise! Within a day of the biopsies, the site they cut and jabbed on has blown up into a hematoma and another explosive infection is raging. I think? It’s hard to be certain; the discharge instructions are too generic. The sheet of paper I left the clinic with mentions hematoma as a fairly common risk with biopsies, with serious infection listed under the “Less Likely” category of outcomes. Being so Largely Unremarkable and Grossly Normal, I wonder: does that make me Likely, or Less Likely? I don’t know, but about seven years ago, this same thing happened at two different biopsy sites, and was a nightmare to get cleared up.
So, to be prudent, on day two I bring my red and purple, swollen breast back to the clinic to get looked at. The nurse and doctor both gasp and jump back with their mouths open when I drop my robe.
“Oh, GIRLFRIEND!?” The doctor exclaims. The nurse closes her mouth, purses her lips, and shakes her head.
“OK then,” I say. “I guess it’s a good thing I came in.”
“OH! It’s a very good thing you came in,” says the doctor. The nurse, nodding hard now, reminds me of a dashboard bobble-head. The spreading redness is measured, and written down as covering a 17 x 14 cm area of my breast (a significant portion, in case you’re wondering). A third round of antibiotics is called in.
Later that day the biopsy reports come back. Atypical ductal hyperplasia is the finding. Surgery is needed. Finally, something that isn’t said to be grossly, disgustingly, disappointingly NORMAL, when I know with my whole soul that it’s anything but.
I’m driving in traffic when the doctor calls to give me the biopsy results. I’m talking on the phone to her with a small dog in my lap and trying to jot down notes on the back of a receipt at a red light. It’s starting to occur to me that I may need to hold still. To stop all this madness. To stay home, and let myself fall apart. I can feel tears that want to fall, somewhere behind the keeping up of appearances for everyone else’s sake. It desperately makes me not want to go anywhere for a while. To become someone with a messy house and unwashed clothes and too many dogs. Or maybe I just don’t want to wear clothes anymore at all. Unfortunately, that’s not what the calendar dictates. I’m going to have to start making some hard calls.
“They’ve gotta come out,” the doctor says about these masses. But first, I have to have an MRI. In order to have an accurate MRI, I have to clear this infection. A tentative surgery date is set for December, with the caveat that if the MRI shows anything the ultrasound failed to pick up on, I could need more biopsies or a slightly different plan. We have to wait and see. When they take these two masses out in December, they will be sent to pathology for more of a reading on whether that is the end of the story, or if I will need further treatment.
To me, these masses seem to have been found incidentally. And I guess that’s a good thing. But I still don’t understand the connection to the reoccuring, bilateral infections. This keeps me awake at night. Especially since technically, there are no more signs of infection, but both breasts still hurt like hell. I can’t hold things against my chest. I can’t tell what is a hot flash and what is a fever. Sometimes I shiver so hard, I sink my body down into a tubful of only-hot water and still, my teeth chatter.
Besides the three separate weeks I’ve been down with these unexplained breast infections, I’ve also worn a groove in the couch from a crummy, two week case of COVID — my third confirmed case since that nightmare began. I’ve spent five of the last ten weeks holding mostly holding still, under threat of duress. But the other five, I’ve spent crammed into airplanes on red-eye flights, sleeping in foreign beds, and eating crappy road food, traveling to retirement parties and unplanned memorials and my brother’s wedding in Alaska, Alaska and Colorado, respectively. And it has all been hard going. The memorial, for instance, entailed 40 hours of airline travel on standby, just to be on the ground for 24 hours.
The day after I tested negative for Covid (and finally felt that cloud lift a little), we hosted my mother-in law who came to visit during Festivals Acadiens et Creole. This is a fun music festival here in Lafayette that we, ourselves, couldn’t even attend when it came right down to it, because the friend’s memorial in Alaska fell right in the middle of it.
Upon landing back at home, we spent a week sleeping in a tent at a music camp out on the Cajun prairie, getting instruction all day and dancing all night. This was directly followed by hosting nine Alaskans who came down for a different music festival. Being the Alaskan Embassy here in Louisiana and seeing all our wonderful friends is a lot of fun. All of these events are a major reason that we live here. But I have to admit, I’ve been about done in by all this activity while navigating these crazy health experiences.
As if all of these misadventures of owning breasts were not enough, the day before the finding of the masses, I had a follow up appointment with the rheumatologist I’d seen a few weeks before. This was the first of the ONE-TWO punch of bad news. 21 vials of blood, eight X-Rays and one MRI later, she’d come up with a diagnosis for me. She delivers the report through a Zoom meeting, literally just as my mother-in-law is coming through the door from Alaska.
“After carefully reviewing all of your tests and scans, I’ve determined that you have an autoimmune condition called Ankylosing Spondylitis,” she says. This sounds like the botanical name of a beautiful, exotic flower. Like Scutellaria lateriflora, or Hydrastis canadensis. Not the vertebrae of a spine or the bones of a pelvis fusing themselves together.
Her voice is so soft spoken, it almost seems rudely detached from what is going on. Her face is deadpan with a slight smile that doesn’t change expressions or react to anything. I noticed this during our initial, in-person visit in Baton Rouge, too. She is used to dishing out bad news, and the walls she’s built around herself are tall and palpable. I don’t blame her for this. People in the healing arts must have a thick membrane — something steadfast and iron clad, to keep them from absorbing the emotions that come with the delivery of life changing information. To let oneself FEEL what other people are going through, day after day, is a recipe for burnout. Ask me how I know.
Her meek and mousy voice softly lays this news on me like a ton of bricks. “There’s also significant damage to your neck and lumbarsacral spine from degenerative disc disease. And there’s osteoarthritis in your hips, but that’s not totally uncommon at your age.”
At least now I know why I have to sit down to put on my underwear, breathing deeply as I fling one leg hole, and then another, around my big toes. If there were an Olympic sport category for getting one’s shoes on while protecting her low back, I would get GOLD. At least now I know why I can’t hold something heavy while taking a step up. At least now I know that it’s not all in my head. But along the way, they really do make you start questioning yourself about this.
“Don’t Google it.” This, they all command of me, while rolling their eyes at my nerve, trying to find out what’s wrong on my own. Well, what the hell am I supposed to do? No one has been giving me anything to go on! Every single other doctor I’ve seen about this relentless pain in multiple places along my spine has dismissed me. For two and a half decades! The tests they’ve ordered have all been Largely Unremarkable. My blood is beautiful. Nothing is wrong.
“It’s likely that because of your traumatic background, it’s just Fibromyalgia.” Up until now, this is the most willing they have been to put a name to my pain, but it has seemed like a garbage diagnosis to me. It is a diagnosis by exclusion. Fibromyalgia is just a name that means, “We can’t figure out what it else it might be.” It has been explained to me as an outsized response to pain because of pathways in the brain laid down by severely traumatic events. (AKA: It’s all in your head???) More eloquently, my herbalist, someone I do actually trust, has described it as widespread inflammation in the body. But inflammation, it seems to me, is just a 21st century word for Satan, and is GROSSLY misunderstood by the Western medical model of ‘care.’
One refrain repeatedly delivered from ALL the various types of care providers I have seen over 25 years has been this: “You need to reduce stress.”
First let me say, this is something I am only now finally, truly ready — and more importantly, ABLE — to begin to address. But through the years, these doctors have not known their audience. This has made those words feel like a hopelessly impossible assignment, almost worse than complete disregard, and just another heavy thing to carry. Almost as useless as saying “Breathe” as a way of helping someone with a tiny human barreling through their insides, tearing through their flesh.
And yet, this is the messaging I have received since I was a 23 year old, single, unsupported mother of two children under 4 living in poverty, when first I climbed onto the going-to-doctors-for-chronic-pain rollercoaster. It didn’t get easier when I became a home birth midwife with a solo practice and no one to whom I could hand off the bag. Or as my babies grew into wayward teenagers, constantly trying to blow up their lives, and possibly mine.
I am learning, but only with wisdom earned through the years, what practicing self care really means. And it’s not necessarily what I thought. It’s not all bubble baths and spa days I can’t afford. It’s not just being freed from the claws of worry over not knowing how to pay the rent even though I’m working three jobs. Nor is it only quiet rooms where no one is nagging me for another snack, or fighting with their brother, or even hemorrhaging on my watch, or getting their shoulder stuck when trying to claw their way out of the birth canal — although those might be good things to eliminate when your body is saying no, and you’re eating your own jaw for breakfast.
I’m beginning to understand that the elusive, holy grail of Self Care (an industry in itself, to be sure) turns out to be a whole lot deeper than all of that. It’s letting go of a certain pressure to be everything for everyone. It has to do with setting boundaries, even, or maybe especially with myself. It has to do with resting more. It has to do with being honest with how I’m feeling, and bowing to reality regarding the shape I find myself in. It has to do with being present for the grief I feel about what this is like, while also making time and space for laughter and things that feel good.
Of course, like 99% of people in the world, I would not even be able to think that thought all the way through if I wasn’t being supported by my husband at the moment — which is a first in my life. Even considering a reality that didn’t involve living with too much pressure would be impossible. Look at the chaos and mayhem we create needlessly (see the above travel itinerary), even with only one of us having to go to a real job! First World Problems? Yes. But were they always? No.
There is nothing more easily ignored than a woman in chronic pain, suffering crippling fatigue; nothing except a middle-aged woman in chronic pain, suffering crippling fatigue. Most especially, one who comes in self-educated. This is perceived as a threat, and so she must receive a double-dose of disregard. And if she is within spitting distance of menopause, everything can be written down under this, the great catch-all. The place where dreams of actual, accurate diagnoses go to die. “We can definitely blow you off now,” their faces all say, while I watch their fingers flying over the keyboard, wedging me into boxes, asking my date of birth for the 6,000th time.
What is the worst thing you can say to a person consistently, ritually ignored by the many, many people she has spent alarming amounts of time and money visiting to get to the bottom of her afflictions? I will tell you: “It appears that nothing is wrong.”
Unfortunately, this is what is Grossly normal, and Largely Unremarkable. But have you met me? I am not normal. I am a lot of things, and normal is definitely not one of them.
Also unfortunate is how unremarkable it is to leave each appointment unhealed, unhelped, and a little more broke. My husband says this about going to the dentist: “It’s like being mugged. Your jaw is sore and your wallet, empty.” Yes, and it’s about the same with gynecologists and chiropractors and all the rest, as relates to various and sundry other fruitless examinations and “treatments.”
I’m sorry to report this from the front lines, but the alternative medical community can be the very worst. Not only do many of these folks fail to come up with an answer, but they line their pockets with my fear. They capitalize on my pain. My struggles have felt downright exploited by certain functional medicine doctors and naturopathic physicians.
I know they aren’t all like this, so if you are reading this and you are an ethical one, please forgive my rant. It’s not fair to generalize, but goddammit, I’m frustrated. I know that these well-meaning practitioners got into this because the health care system is really a disease care system (and then, only sometimes), and they just want to help people.
But it seems many of these people have had way too much money to make on the 50505883387 supplements they’ve wanted to sell me, and all the esoteric, expensive tests, not covered by my insurance (and, I daresay, not recognized as evidence based). Poop in this cup. Pee in that one. Get more blood drawn. My arms are becoming as tracked as a heroin addict. It costs $500.00 to map my gut microbiome, $450.00 to undergo questionable food sensitivity tests, out of pocket, of course (though I have spent countless dollars on health insurance premiums and deductibles and “patient responsibility” co-pays). All to be told that to solve my problems, I just need to avoid 17 different foods. “But make sure you’re getting good nutrition!”
I did recently learn from blood taken out of my poor, scarred arm, that I am one of the lucky individuals who has the double mutation to the MTHFR gene. And yeah, this feels like how it reads — an irony that isn’t lost on me.
The mold tests and nutrient deficiencies and chronic Lyme/ tick borne illness-shades-of-grey can go on forever. I am offered IV infusions of this and that substance/vitamin/element to fix the many, endless imbalances my body shows, all for the low, low price of $100 per week. Each. And will any of this do FUCK ALL for me? No. It will not. It has not.
The years spent with chiropractors pushing and shoving my bones around — bones that were secretly, slowly concretizing — seem to have done nothing much more than pay for the posh furniture in all those swanky offices.
For all my time, and ALL my money, until now, the only thing the approximately 7763937790 medical appointments I have attended, and the $876444377 I’ve spent trying to get answers, has ever nettled has been a prescription written for yet another antidepressant that I won’t take. Oh! But there are always more kinds to try!
On a really good day, my past, at least, is recognized as at least slightly abnormal. “Examine your stress,” they all say, which is the chicken asking about the egg. But I do have to give them credit. This is the one place where they are willing to concede that yes, it’s possible there is a mind-body connection, after all. Perhaps my high Adverse Childhood Experiences Score (ACES) has some bearing on the unbearable pain. The Problem List (!!!) is a mile long, each one with a special insurance code that will justify ordering more tests, and then blowing me off. Because everything is just so Grossly Normal, they recommend therapy. I have been in and out of therapy since I was three, by the way. It’s all been very Largely Unremarkable.
So, now that it’s not, and I’ve finally qualified as slightly more remarkable and a little less normal, the reward is to cut the problem from me. And a prescription for stronger NSAID pills, which, Thank All That Is Holy, are taking the edge off. (No telling what they are doing to my insides, but at this point, I’ll take the bait). I am to give myself injections of an immunosuppressant drug once a week to keep my immune system from attacking my joints, but not when I am sick with an infection or about to have surgery. So there’s no telling if or when that might ever begin. And I am very conflicted about putting a substance such as this in my body.
I went through four hours of phone calls and forms to get this apparently highly-regulated drug delivered to my door. It’s hard to imagine that more insulated padding for the ice packs, or a larger box for the four little point-and-shoot “pens” wouldn’t be used on the transport of a nuclear weapon.
I stare the box of these vials down in the refrigerator, waiting for a mythical time when I am neither sick or infected or about to undergo a procedure involving a scalpel. I need my immune system just now. Even if it is a haywire one, it’s the only one I’ve got. I can’t really wrap my head around using this drug, so perhaps it’s ok for it to sit there, keeping shady company with the butter and the half and half, the eggs and potatoes and all the other things I’m supposed to not be eating anymore. I need a minute to get used to this idea. To absorb all of this information. And to see what is going to happen next on this Shoots and Ladders odyssey through the maze of the American medical system. I’m sitting naked on the couch in my messy house as I write this, with two dogs at my feet who do not judge me for it.
Photo Credit: https://i5.photobucket.com/albums/y164/wteach/pictorials/Fun/roller-coaster.jpg
Stella, this is brutal. I don't know what else to say except I hear everything you are putting out there.
That old expression, sounds like you're been through the wringer, may apply--without that eject bar! Sorry for your trouble. We've been on the autoimmune roller coaster about 20 years with my wife's lupus. Medicines, reading, questions, command decisions when things are going south, always prayers, often unusual answers and directions and even comfort have all been on that track.