What Can I Say To Make You Believe Me?

On copper toxicity, the female body and the twisted mind of medicine

In every romantic relationship there are what I think of as “jewel moments” — dense whorls of time that make the entire enterprise worth it, even if it eventually comes to a painful end. One of the jewels of my last relationship occurred in the now-defunct Wolfman Books in Oakland, a clean, exquisitely curated wood-panelled room on 13th and Franklin. On some blustery night in the East Bay, J and I wandered off the street and into the lee of it. In the back: a prim androgynous bookseller, hardly glancing up as we walked in; in the rest: a room remarkably bare, save for a few low tables laden with books and a sparse armada of floating shelves which cast big, warm shadows up towards the ceiling. Stepping in, one had the feeling of being safeguarded, almost stowed away — though from what it was difficult to determine exactly.

The selection at Wolfman was ever new, ever hip and challenging. More than a mere store, they were a publishing enterprise and a community space as well — they put out a literary magazine called New Life Quarterly and would sometimes host and/or sponsor radical leftist events and experimental warehouse parties.¹ On this particular night, my very first time in the store, all I knew was that I liked the space, felt safe in it, tickled by its promise of new forms of knowing, by the small square titles with bold colors and minimalistic designs, the work of their design-obsessed founder, Justin Carder. Then, a book caught J’s eye. It was a diminutive little volume, up on a high shelf with rest of their recent publishing efforts. He plucked it and handed it to me: “I like this,” indicating the matte black cover with three straight strokes of copper foil. As I turned the book in my hand, the copper bits glinted cheerfully in the light. It was by a writer I had never heard of and had a strange, evocative title — something about an IUD. “Let’s get it,” I told him playfully, feeling still then drunk on the night, the serendipity of the space, and even a bit on love. We bought the book and thought nothing more of it that night.

Later, settled somewhere in the blue-grey dimness that now glazes my memory of that apartment on Josephine Street, I opened the book for the first time. The opening lines were lyrical and painful, though I cannot now recall exactly what they were.² The book was a memoir, as well as an ethnographic study of women who had become very sick after being fitted with the copper IUD, a supposedly reliable and safe form of birth control. The author herself, Caren Beilin, had developed an autoimmune disorder — rheumatoid arthritis — related to her copper IUD. At the time of my reading, I also had a copper IUD inside me — not my first, but my second. The book, a book that would come to entirely change the course of my life, was called Blackfishing the IUD.

Sadly out of print, due to the pandemic closing of Wolfman Books. Here is an excerpt in Fence.

From Beilin, a key definition:

black • fish

verb. 1. destroy a cultural notion of normalcy around something, as the 2013 documentary Blackfish did for whales in captivity.

I got my first copper IUD in my sophomore year of college. Sexually liberated but protective of my body’s natural processes, I wanted a form of birth control that would be reliable but non-hormonal — as close as possible to a physical blocker one could place and forget. In all of the articles I read online — always on sex-positive feminine-coded websites with names like Flo or Glo or Stargirl — the copper IUD was touted as safe, reliable, and reasonable. Set it and forget it! The birth control for grown-ups! Here is the write-up on copper IUDs on the Planned Parenthood website, almost bouncing with positive encouragement:

The copper IUD is really good at preventing pregnancy, and it’s totally hormone free. […] There are lots of other benefits to IUDs too. They’re super convenient — once your copper IUD is in place, you don’t have to think about birth control for up to 12 years. IUDs are also one of the most effective methods of birth control you can get. They’re more than 99% effective at preventing pregnancy. But if you decide you want to get pregnant, you can get your IUD removed whenever you want…

How does it work? An IUD, or intrauterine device, is a seemingly-medieval device that lives in the uterus in order to make it inhospitable for pregnancy. Hormonal IUDs do this by slow-releasing progestin, a synthetic hormone that thickens the cervical plug and stops ovulation. The copper IUD does this by causing a local inflammatory reaction, as well as releasing copper ions that are supposedly poisonous to sperm. From Planned Parenthood’s current article on Copper IUDs, as of October 2022 (emphasis mine): “Sperm doesn’t like copper — it changes the way sperm cells move so they can’t swim to an egg.” Hypotheses exist that the presence of copper ions have a spermicidal effect in the cervical mucus; other hypotheses exist that the copper ions even kill or damage the eggs themselves. The most definitive study on the mechanism of the copper IUD I could find dates back to 1976, and involves intrauterine copper in rabbits; this study predates the widespread usage of copper IUDs in humans.

In the waiting room for my IUD, almost disturbingly dim, I watched a final fluorescent tube flicker in the ceiling as though struggling against life. Then, ushered in by a young and impatient nurse, I submitted myself to a list of clipboard questions and risks. There would be some pain — some said very much and some said hardly any. And then there was the issue of increased menstrual flow and more painful cramps, both well-documented side effects. Was I prepared for all of that? I told her I was, that I was ready. Then: a cold speculum, a flash of pain. The nurse reached inside me to trim the strings with a pair of scissors and then she was gone, leaving me to the rest of my supposed 10 years with this new object inside me.

This particular IUD did not last 10 years. Instead, I had it removed some 3 years later because — despite the medical literature, despite the claims on the you-go-girl websites and laminated family-planning pamphlets — I had gotten pregnant, and needed to seek an abortion. After my abortion, I had another one fitted right away, during the very same visit to the hospital. In my mind, the IUD had only failed me once: a cosmic hiccup, improbable to the extreme. I did not yet have the activist imagination to consider that the harm might be ongoing.

Photography by Marius W. Hansen.

The next three years would turn out to be some of the most tumultuous years of my life. In what I ascribed at the time to college jitters, I experienced levels of self-doubt, rumination and relational anxiety that expanded my sense of what frailty was possible for me. Buoyed only by art making and a steady network of friends, I told myself I was deepening in complexity and life experience. Mental health struggles seemed already to surround me; was it really such a surprise I would fall prey to them too? I told myself I was having a canonical experience, an American coming-of-age, and no one contradicted me. As I studied, and wrote, and continued to wade my way through college, the bright-eyed freshman I had been — optimistic and buoyant and determined as the sun — seemed to fade irretrievably into the past.

The next three years also saw my body utterly transformed. Thinking I was simply overeating out of stress, I watched myself gain weight with a mystifying steadiness: five pounds, then ten, then fifteen… At the end of college I was forty pounds heavier than I had been when I entered. It was as though the “freshman fifteen” had merely been a prelude to an orgy of growth. I told myself I was simply too busy to exercise enough, though I did already exercise regularly, and no one contradicted me. I told myself that I was simply not disciplined enough to constrict my eating — that I was giving in to my own hunger, unable to set things right.

In the years that were to follow, I would become familiar with a sluggishness in body and mind that came to feel so normal, it became a part of my personality. I would regularly sleep for 9 hours or more, and find myself blinking at my computer screen in the afternoons, unable to follow what had just been said, or the task I had just set about completing. I continued to exercise, to work, even to run a living co-operative with my best friends. I made art, played shows, ran educational experiments at work and presented my research. It all seemed utterly doable, so I decided I was fine. Living, I told myself, was inherently tiring.

Part of what makes women’s health so difficult, so unruly, is that sickness in women is so often parsed as women-being-women. Looking back, all I can see are the myriad ways I told myself my experience was normal when in fact, it was not. Was I being ineffective at work or merely a woman — subject to the vagaries of her natural hormonal rhythms? Was my body having trouble losing weight or was I just undisciplined — addicted to chocolate or oat milk or whatever else I had been craving? Was I extremely tired or merely a woman — stretched to the breaking by her many post-feminist commitments? I did not feel entirely well, but I did not think I was sick; rather, I did not think it was normal for any woman to be entirely well. Having internalized the toxic idea that a woman was inherently emotional, inherently flighty, inherently less efficient, less effective than her male counterparts, my sickness seemed to me to be just another expression of my gendered being. I came to own it, then, as an extension of myself.³

Sculpture by Fausto Melotti.

Some of the most moving parts of Caren Beilin’s book document the Facebook groups and forums that women join in solidarity with their sick peers. It seems that in the absence of support and recognition from the formal medical establishment, human beings naturally form our own networks. As Beilin notes, these groups serve a variety of functions for their users, from crowdsourcing diagnoses to a safe space to vent; they meet emotional and spiritual needs in addition to practical ones. A representative selection of some comments one might find on a site such as these:

Hi, wanted to thank you all for the support this group has given me! I’ve recently had to move back home and quit my job because my anxiety and mental health has become so bad that I feel like I can’t function independently anymore. I have a boat load of other symptoms (I’ve posted before about it asking questions) and finally made an appointment to get it removed. I’m going to planned parenthood to do it, has anyone else gone there for this? If so, was it a good experience?

Are there any other ladies with left side discomfort or pain? I've been wondering if the excess copper could accumulate on the rib joints and cause inflammation in the cartilage.. i have some inflammation in my ribs on the left side, I can feel they're a bit swollen…

pain, delayed periods, increased level of stress, numbness and lightheadedness sometimes ..i have no other symptoms like bloating bleeding issues and hairfall

I am not sure all symptoms are caused by copper or something else is wrong with my health

what should i do.. what if i don’t get it removed? will these symptoms become more severe? and can it lead to having arthritis for life even after getting it out?

These particular comments come from a group of which I am a member, a self-titled “Copper IUD and Toxicity Support Group,” and I’ll be honest, despite Beilin’s activism, despite having mostly accepted the imbalance of copper in my own body, I still feel discomfited by my membership. The group comments range from deeply supportive and sisterly to unhinged and panicked; some women blame themselves for health issues that are clearly not their fault, others blame the IUD for issues that could be totally unrelated. There is something uneasy about this experience of being on the edge of science, as it were, as though I am afraid myself that too much exposure to these groups will tip me into full-on vaccine denial or believing the earth is flat— but at the same time, I cannot deny the experience that I have had, and the experience is utterly and irrevocably shared. I am grateful to these other women for lending their care to strangers on the internet, for forming a supportive netting where medical science has failed us; at the same time, I resent that it is their work to do, unpaid and mostly unrecognized, and I resent that I have to turn to advice and research on the fringes of science in order to right myself.

And in the absence of scientific thought, in the absence of a credible doctor’s voice — as the doctors can only repeat that copper IUDs very rarely cause copper toxicity, very very rarely — I cannot make any certain claims myself. I can only guess, and upon these guesses, I have to build my life. As Beilin wrote herself: “I can’t spy the center of the inception… I only know the timing. My health deteriorated rapidly after it was in, and I know how horrible it is, to cease planning for trips, outings, applications, or children, waiting and watching for how bad and how soon.” I didn’t have the same sense of immediate causality as Beilin — my own situation took many more years to parse, and only began to make sense in retrospect, after J handed me her book at Wolfman — but I did eventually come to see some cause-and-effect, or at least the convincing illusion of it, in the laying side-by-side of events and the innocence of what they suggested, in the impossibility of taking them up for certain, in the fear that what I suspected as truth would alienate me from a world I otherwise depended on, nonetheless I saw the cause, and then I tried not to see it, and then I saw it again, again.

Sculpture by Saelia Aparicio.

There is a section in Blackfishing the IUD that I think of often, and it concerns this: you can use a copper nail to kill a tree. The mechanism of this act lies in the copper ions and oxidized copper compounds that accumulate in the living tissue of the tree, inhibiting processes like photosynthesis, root tip growth and and the proliferation of healthy growth cells. (While I had my IUD and still now, my hair thinned; my pallor became faint and yellowish.) The power of this scene turns on the violence of the act, imagining nailing something into a living thing with the intention to kill it, but also the visceral sense of toxicity therein: the idea that a tiny metal splinter can best something so solid, so corporeal, as a living tree. The implicit argument is, if copper can kill a tree, why do we believe it is safe to put this same material directly inside our reproductive systems? Why do we believe that “local inflammation due to copper ions,” a spooky process not much studied since the 80s, can ever be fully local, fully contained, fully understood and managed?

How toxic is just toxic enough?⁴

When I think about this story, I feel silly, seeing the biases I had at 20. At the time, I saw the copper as an inert metal, similar to stainless steel or aluminum. And I saw the hormonal alternatives in some way as a ‘foreign chemical,” finding uneasy the way they would disrupt my menstrual cycles or even end my period altogether. A heavier period, I reasoned with myself, was better than no period at all — at least I would still feel my body was doing its job, so to speak, albeit with more difficulty and pain. At least I would still feel like myself. My family doctor had tried to explain that the hormonal IUDs were better, but on account of their lighter side effects and marginal improvements in reliability; she mentioned nothing about copper toxicity or the possibility of a full-body disruption. Still, what if I had done the right forms of research, asked enough women, found my way to a more robust version of the truth? What kind of person would I have become, what thoughts might I have been able to think, dreams might I have been able to realize?

Whenever I find myself thinking like this, I have to catch myself. To retrace my steps, reanimate my old thinking is a trap that confuses systemic failure with individual choice. To ask myself what I would have done differently is to ignore the glaring reality that, had these systems functioned as we pretend they do, I would have been informed of the actual risks involved, the actual evidence — however anecdotal, however qualitative — that something was seriously wrong with the claim that the copper IUD was reliable and safe. How can I blame myself when the system was operating under completely false pretenses, passing for science what is in fact bald-faced negligence — a refusal to document and account for undeniable, massive, collective lived experience? How, too, can I be expected to live peaceably in the same society that produces this: to go to the grocery store, to vote, to produce work calmly when at the most basic levels, the systems supposedly designed to care for me continue to lie to my face?

When I think of all that, I feel angry — perhaps even hysterical. I am angry at science, at medicine, at the doctors and nurses who pass on the questionable orthodoxy as though it is scripture. I am angry at the paternalistic articles and online explainers about what the copper IUD can and cannot do, about what is supposedly impossible, improbable, exceedingly rare. About passing toxic accumulation off as “psychosomatic” or another undiagnosed chronic illness. I am not very familiar with anger, being socialized into a world that prefers its women receptive and gleaming. But I am becoming more familiar with my anger these days — recognizing it as a part of myself, a roiling in my stomach so deep it makes promises I have never heard before. When the IUD left me, the anger returned, like a part of myself I had disowned in order to believe the made-up stories of the world.

From A Popular Treatise on Comets (1861) by James C. Watson.

I have not had my IUD for fourteen months now. I removed it myself, accidentally in fact, while taking a shower in Detroit and removing my menstrual cup. Suddenly — with a strange swoon of pain — the coil was in my hands, already oxidizing a bit in the pale light. Disgusted with myself and a little woozy, I pressed myself against the pale blue tile of the bathroom, hoping to regain my balance. I didn’t call out to my housemates, worried to scare them, worried to scare myself. Then: the wooziness settled and I was suddenly fine. Surprised, I washed the IUD of blood and put it in a small empty mason jar on the bathroom shelf — like a specimen for a museum, removed from a body already rapidly becoming not-mine. I stepped back into the tub, closed the curtain, and finished my shower. For several days, as though belaying my own acknowledgement of the truth, I neglected to tell anyone what happened.

Then, over the next weeks, something strange began to happen. There had long been a buzz inside me, a kind of anxious static, and it was suddenly gone. Not quite sadness, not quite fear, the buzz simply cast a heavy pallor over things — gave every moment a sense of constriction, of potential loss. Now that it was gone I was experiencing a set of feelings I thought I had relinquished entirely with my youth: simple, blithe feelings, like the pleasure of merely being alive. In those early days I remember looking out through the attic window at the neighbouring roofs on Halleck Street, the fall colors in Hamtramck Michigan, and just admiring the trees. And then how surprised I felt to notice I had been doing that, as though some old part of me had suddenly woken up from a very long hibernation, shaken but essentially intact. Altered but sincere. It scared me how much better I already felt. I tried not to think about what it all meant.

Over the next few months I began to sleep less, noticing I could wake from 7.5 or 8 hours of sleep and feel fine. I lost weight, about 30 pounds in total — from a combination of concerted dieting and a body that suddenly seemed able to yield to its own transformation. It became easier to plan, to become optimistic about the future. My mental health stabilized in a way that made it easier to care for myself: more predictable, almost pliable in the face of small changes.

The shifts were subtle but unmistakeable, tangible but impossible to pin down. I felt rather like a woman whose life had been saved by an exorcism — grateful, but unable to speak the truth. Alive, but embarrassed by what had saved her. Indebted to forces mysterious and crude.

For the longest time, even, I didn’t want to believe that the IUD had caused everything. I didn’t want to read the blogs, I didn’t want naturopaths and holistic health practitioners to be so relevant to my life. I loved science, and I had never wanted to leave the advice of the medical establishment. The problem was, science and medicine clearly didn’t love me back. So, like so many other women, I was forced to forge my own path — to try to understand the language of mineral imbalances and the “calcium shell” and the complex compounding effects of “copper dumping” and chelation. To understand the difference between blood tests and hair tests, copper in tissue and blood and bone. To try to forge a language and a structure around my experience not in order to feel special, but in order to make sense, to belong again to a world in which something could be done — even if that world seriously departed from all that I had been raised to believe. In order to survive, I was forced to become a stranger to myself. In some ways, I resent that more than I resent the ways my IUD had made me sick.

I hadn’t thought of this for some time, of the copper IUD, or mineral balancing, or any of that — in large part because in daily life I try not to think about it all. But recently, I was forced to, because I once again had the symptoms of copper toxicity. Bloated, tired, feeling horrid and very sad, I gained 2-3 pounds over the course of a month in which nothing else had changed. I was reminded because a friend recently came over and commented on my copper cookware, a set I had inherited from the subletter and had been idly using, not thinking much of it. The only thing that had changed over the last month was that I had cooked more — much more. Could the cookware have caused my symptoms? I didn’t want to think so, but I couldn’t spare the possibility. I stopped cooking with them. The feelings went away. Quietly, almost embarrassed that it had worked, I went back to my life, saying nothing, telling nothing, living on the patchwork I had made — a patchwork of knowledge systems meant to carry me whole.

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Discussion Questions

Feel free to reflect by yourself, with loved ones, with other readers in the comments, or in the weekly reading group hosted by mda.hewlett@gmail.com.

1. The practice of doctors, nurses or representatives of the medical establishment dismissing the claims, symptoms or experience of their patients is called “medical gaslighting.” Have you ever experienced this? In those moments, what helped, if anything?

2. What are the systems of medicine you use in your own life? Which are formal, and which are informal? How do you feel about the informal systems?

3. Do you feel like you can trust your own sense of what is wrong inside your body? Why or why not, and where do you think that comes from?

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If you liked this post, you might like this piece on womanhood in Pakistan or this piece on a systemic reading of laziness. As always, here is the complete archive of past essays.

Acknowledgements

To Bogdan: it was lovely having you stay on my couch for the days I was writing this essay. Thank you for listening with a keen ear, for offering your research skills and helping me make connections between this issue and other forms of medical gaslighting and malpractice. It’s always a gift to make a friend who understands the intensities and vagaries of making something new.

And of course, to Caren Beilin, the folks at Wolfman, J, Megan Westbrook, Anna, and everyone else who has always supported me when I needed to go off the map. I wish our collective structures for healing reflected the patience and love you have always shown me, the space you gave me and so many others to be truthful about what was happening to us.

Self-reported experience is a legitimate form of knowledge! Or, as my mentor MB is always saying in the context of ethnography: People Make Sense.

1. At these latter offerings, the entire East Bay artist-intellectual crowd would seemingly materialize, dressed to the nines in thrifted blazers and inconceivably bold hats. Someone’s terrible art school project would be playing on the projector above and a disco-funk-jazz outfit would be grooving in the corner, astonishingly talented and completely uninteresting to most of the people in the room. Tinsel and magenta lights over a dance floor sticky and mostly unused; someone’s lost red high heel next to someone else’s anarchist slogan tote. Their whole ethos was neatly contained in the enormous bumper sticker they shipped me one year, the white letters maxed out on a bright red background: MY CRUSH SHOPS AT WOLFMAN BOOKS.

2. I lent my copy of the book to a friend, so it is now in California, nestled somewhere on a busy shelf. Worldcat tells me my closest library copy is in Ottawa.

3. This is for another essay, but I will add that this idea extends beyond the realm of womanhood and applies to other identity-based norms. If we believe that Black folks are inherently violent, for example, inner city crime rates appear less as collective crises and more as inevitabilities to be exploited by the prison system. If we believe that certain students are inherently less intelligent than their peers, we fail to spot the environmental factors inhibiting their growth. The stories we tell about people, then, determine the problems that it is possible for us to see.

4. My new friend B has been reading, lately, Rachel Carson’s Silent Spring. One of the major themes in the book is the idea that the chemical pesticide industry repeatedly pushed the idea of a “safe tolerance” for certain chemicals like DDT — a ghastly toxin and carcinogen which has since been banned from agricultural use in many countries.