“A painter should write. A writer should read. No woman need envy a sexual freedom that begins an inflammatory process in her womb. And if it has already begun, she must go blackfishing.”
Blackfishing the IUD by Caren Beilin is a hybrid thing—partly memoir, partly personal essay, and partly searing critique of the treatment of women’s bodies within the medical system.
The verb, to blackfish, is defined before we reach the main body of the book: to blackfish is to “destroy a cultural notion of normalcy around something, as the 2013 documentary Blackfish did for whales in captivity.” The culture of normalcy Beilin sets out to destroy in Blackfishing is around the copper IUD, a method of non-hormonal contraception that works through the placement of a copper device in a woman’s uterus.
Beilin blames the copper IUD for triggering her Rheumatoid Arthritis (RA). Beilin cites many medical studies that show how the autoimmune condition can be triggered, in those susceptible, by the copper IUD. Information about this potential risk is not widely distributed and is rarely, if ever, mentioned on major health care websites in the U.S. It is also not mentioned on any in the U.K., as I discovered when Beilin’s book inspired me to do some research into what my own country’s healthcare system says about the IUD.
In sections, the book is collaboratively written with a group of anonymous women whose contributions read as comment posts in online forums. All women experienced intense, adverse reactions to the copper IUD, and many felt their experiences were ignored or belittled. There are large online communities, made up mostly of women who share these sentiments—Beilin highlights two of them, The Canaries and CopperIUDDetox.
In addition to the formation of these communities, Beilin’s book comes at a time when narratives of chronic illness, particularly those of women, are experiencing a little more literary spotlight. The last couple of years have seen the publication of titles including Porochista Khakpour’s Sick: A Memoir and Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain. Blackfishing joins a chorus of voices calling for women’s pain to be taken seriously and marks itself out as a work of literary nonfiction that contextualises pain using scientific, literary, and personal reference points.
I had to pause a few times while reading Blackfishing, because there is so much pain in it. Beilin perfectly captures the oxymoronic nature of chronic pain—the monotonousness married with shocking, white-hot blasts of agony. “Pain hurls brooding birdschools of bruising in my connective tissue, a burning bluing that cruises before it pricks and burrows beneath a bone.”
These moments of all-blurring pain reminded me of Sally Rooney’s first novel, Conversations with Friends, in which the narrator Frances suffers intense spells of debilitating menstrual pain and is eventually diagnosed with endometriosis. She recalls gripping the side of her bathtub, wracked with pain: “It scared me so badly that the only comforting idea I could think of was: maybe it’s not happening. I kept returning to this thought every time I felt myself starting to panic, as if going insane and hallucinating an alternate reality was less frightening than what was actually going on.”
Rooney and Beilin are speaking to the kind of pain that mires your brain in fog, turns walking to the bus stop at the end of a long day into an experience somewhere between sleepwalking and a hallucinogenic trip: as Beilin writes, “Unable to think outside of panic, the pain.” They’re also speaking about pain with a source that remains frustratingly taboo. IUD complications, endometriosis—both are conditions that, in the majority of cases, affect only women.
Blackfishing feels like a book a lot of people would describe as startling in its intimacy. It is, certainly, intimate, charting the nebulous place that exists between knowing what your body is and also having no idea what is happening to it—between the physical effects of illness and its mental strain, which is and is not a symptom, and is and is not physical. But it’s also a book that makes you question why you’re startled—why we are still surprised when a woman talks about her body as though it is a living organism that processes and sickens and excretes, rather than a symbol, a cultivated image, something that doesn’t exist more than a millimetre beneath the skin.
Like Beilin, I have an autoimmune disease. Not RA, although it was in the frame as a potential diagnosis at one point. My grandmother had both RA and Inflammatory Bowel Disease (IBD). She died before I was born, but I thought of her when reading about Beilin’s mother’s experiences with Multiple Sclerosis (MS), when she questions whether she needs a ‘cause’ for her RA beyond her mother, beyond her genetic predisposition towards autoimmunity.
In my opinion, one of the most challenging things about an autoimmune disease diagnosis is the idea that your body can misrecognize parts of itself as other—as antagonistic. This is often exacerbated by lengthy periods of illness before a diagnosis is reached, as well as by regular dismissal and disbelief from medical professionals. It becomes a treble crisis of misrecognition; the body’s immune system misrecognizes its own tissues as a threat to be attacked; medical professionals misrecognize the sick woman as paranoid, as a time-waster, and misdiagnose her with anxiety or stress; and the sick woman comes to misrecognize her own, very real symptoms as phantoms, to misrecognize her own knowledge of her body and mind as faulty, hysterical.
Looking at websites designed to support people with systemic autoimmune diseases, it’s striking how often people—disproportionately women—are thrilled to be diagnosed with a lifelong medical condition. Thrilled, because it validates their correctness in the face of repeated dismissal from healthcare professionals. Thrilled, because they aren’t paranoid. Thrilled, because somebody has finally believed them.
The moments when Beilin grapples with doubting her own feelings, with the worry that she is being paranoid, when she is trying to find an external cause to rationalize her condition, are simultaneously the most difficult to read and the most affirming. She writes that “the paranoiac, she’s a pinpointer, a dot collector, and a heretic.” She writes, “I feel ashamed, like it’s all untrue except the RA. The tests. My blood. The truth.” She pushes back: a pharmaceutical company “put their high-profit waste, a copper cross, in a place that’s susceptible to generating autoantibodies in response to environmental triggers. Wear my fingers. I got RA shortly after.”
This book is by and for women who feel let down by a healthcare system that has systematically sidelined their pain. The interactions Beilin recounts with doctors are in many ways frustratingly familiar to me—though still in other ways something of a culture shock, as the U.S. medical system often feels very alien to people who have been fortunate enough never to experience illness in a country without universal healthcare.
The doctor who said, in a hurry, “Do me a favor, don’t read anything any longer,” when Beilin asked for more information regarding treatment options she had read about? I recognised this doctor, a woman herself, who “was like a Nietzsche, hating the woman-reader, or like Renoir, and I was a spoiled subject now. Unattractive with my reading. Showy. Unpaintable now.”
A “spoiled subject” is very apt—there is a lot of evidence to suggest that women’s reports of pain are taken less seriously than men’s. This is often even more true for women of colour. If your pain doesn’t go away, and you return to the doctor time and again, you risk becoming a “spoiled subject.” Untreatable, because the issue is not your health. You have been sized up as a subject and found somehow wanting.
In the early days of trying to get my own diagnosis, I was told at various points that I seemed too happy in myself to be ill. I had been extra smiley and polite, to try to persuade the doctors and practice nurses that I was not paranoid or hysterical. This was because, when I’d gone in to the same practice looking as worried as I felt about my increasingly life-interrupting symptoms, I was repeatedly told I seemed very stressed, and perhaps I was in denial that my new job was too hard for me (it was not). Perhaps it was stress and anxiety, yes? (No.) One senior practice nurse even pretended to give me a referral to a specialist. When I switched practitioners, it became apparent the nurse had not, in fact, written, sent, or made any note of the referral anywhere in my file. I was a spoiled subject—unpaintable now—and she had just wanted me to go away.
It is so easy to spoil yourself as a subject, by accident. I know a number of men, a number of people who aren’t women, who have had to worry about this as well. But in the main, if you are perceived as a woman, you are more likely to have felt the pull to analyse your own behaviour, to work out if your spoiled self is, in truth, why the doctor doesn’t believe you, because so often, we’re told implicitly or explicitly that it is.
When Beilin visits her third rheumatologist, who listens, who wants to know the full story, she writes, “I cried on my way home, gingerly across the bridge and in the blatant October lighting, to be asked,” and the sense of relief and appreciation is overwhelming. To be asked, and believed, almost means more than being cured.
Discussing this book with a friend, she raised the issue of distinguishing between unaddressed medical injustice and the pseudo-medicine that damages public health. It made me want to be very clear here: Blackfishing is not like anti-vaccination campaigning. There are material differences, not least of which that ‘anti-vaxxers’ want to stop people from getting vaccinated, and Beilin is clear that she does not want people to stop using contraception. She takes aim instead at a culture of normalcy around what anyone with a uterus is expected to endure from their chosen method of contraception. Your inexplicable pain and suffering following the insertion of the IUD is all in your head. You feel much better now that it has been removed? That doesn’t prove anything. You’ve read a credible study linking the copper IUD to disease in at-risk groups, and calling for more research? You aren’t a doctor. Stop reading.
The attitude remains: a lot of people have used the copper IUD and are or were fine. But I do not know a single woman who still uses the first method of internal contraception she tried. I know only a small few who have never had to stop using or taking any form of contraception due to unwanted or unpleasant side effects. Talking amongst one’s friends, it may be obvious that these things sometimes work very well, and sometimes they really, really don’t. I cried for six weeks while taking that, so I stopped. That pill gave me awful migraines. The implant worked so well for me the first time, but when I got it replaced it was like my whole body was being zapped with electricity over and over. There may be a worry that, by complaining (or merely voicing your experience), you are somehow undermining women’s sexual freedom, that you are making it easier for those who want to take away your right to choose.
But asking yourself if that is the case is the wrong question. The right questions: is this sexual freedom if it is hurting me? Is this sexual freedom if I am not allowed to speak about it? Beilin has an answer: “No woman need envy a sexual freedom that begins an inflammatory process in her womb. And if it has already begun, she must go blackfishing.”
Note: readers are encouraged to listen to Caren Beilin’s podcast of the same name, “Blackfishing the IUD,” which “more broadly [explores and shines] a light on women’s experiences around reproductive healthcare and the medical industry.” The podcast hosts conversations “with authors, activists and patients who have been deeply affected by the IUD or by gendered medical gaslighting in general.”
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