Blackfishing the IUD

by Caren Beilin

Literary Nonfiction. Memoir. Women's Studies. BLACKFISHING THE IUD is a daring and demanding memoir by author, Caren Beilin, about reproductive health and the IUD, gendered illness, medical gaslighting, and activism in the chronic illness community. Rhapsodic and unabashedly polemical, Beilin scrutinizes the literary, artistic, and medical history of Rheumatoid Arthritis, as she considers the copper IUD's role in triggering her sudden onset of chronic autoimmunity. As the title makes abundantly clear, the book is an argument that the copper IUD is sickening quite a lot of women - and that we listen first and foremost to women's testimony to begin to resolve it.

Genres: Nonfiction, Feminism, Memoir

165 pages, Paperback

First published October 17, 2019

About the author

Caren Beilin is the author, most recently, of the novel REVENGE OF THE SCAPEGOAT (Dorothy, 2022). She has also written a nonfiction book, BLACKFISHING THE IUD (Wolfman Books, 2019), and a memoir, SPAIN (Rescue Press, 2018). She teaches at the Massachusetts College of Liberal Arts and lives close by, in Vermont.

Reviews

[Kevin · Rating 5 out of 5]

Beilin is one of the most spectacular writers I've discovered in years and I binged all her books after reading her "autofiction" memoir, Spain, last year. Blackfishing the IUD is a full throttle flamethrower meant to illuminate and dismantle the way gendered illness is discussed and treated RIGHT NOW!
Specifically, it's about the dangers of intrauterine devices (IUDs) and how the copper elements in the author's IUD triggered a crippling ongoing struggle with RA (rheumatoid arthritis). Interspersed with accounts from other people affected (from online discussion boards, which are numerous), this book is a wake-up call. But it's also a Caren Beilin book, which means it's a wildly stunning mix of references--from Etel Adnan and J.A. Baker to medical history and coffee enemas--and styles (Beilin's writing in all her books can swing from rage to humor quickly and unpredictably).
This book will coincide with a podcast featuring authors, activists, and patients on October 17th. The book is published by the wonderful and artful small press, Wolfman Books, so it may not be as widely seen as other health-related books. I urge you to order it straight from the publisher. http://wolfmanhomerepair.com/blackfis...

[darce vader · Rating 3 out of 5]

I have complicated feelings about this one. It gave me intense anxiety and I very nearly ripped my own IUD out. I guess part of me is angry that books like this exist - why do we have to read books about birth control and get so angry? Welp, it's because it's fucking hard to advocate for your health in the pretentious, gatekeeping world of medicine. We put copper inside our bodies just so men can't put their terrible children inside us. Choose your own adventure: children, RA, ovarian cysts, months of bleeding.

[Megan O'Hara · Rating 4 out of 5]

can't believe i finished a book let alone this book. literary non-fiction in the vein of Anne Boyer so i enjoyed it a lot. kind of cringey at times ("the whole world is always looking for the soft CUNT* type stuff, etc...) but mostly really nimble and smart. i have a (thankfully not copper) IUD in me right now and i have been struggling to think thoughts and keep thinking i see people out of the corner of my eye? 🤪 would reread when i can actually handle big brain shit like this if only to heighten my own paranoia

[Emily · Rating 5 out of 5]

I read this in the middle of the night, my hands bound up in braces, almost unable to hold the pain that grasping a book can sometimes ask of me.

And in it, I found such affirmation in Beilin's crystalline declarative truth of what it is to be a woman experiencing healthcare systems.

But amongst all the pain of diagnosis and feeling let down by the people who were supposed to heal you, Beilin gives hope. Through the stories of other women coming together, to the clarity of new studies, and most striking to me, in her third rheumatologist.

"But I was crying. It was me who was crying, walking home, because he'd said, "I need to hear your whole story. I don't trust doctors, inherently, so I need to hear it, as length, from you." And still I didn't tell him, about the IUD at least. But I cried on my way home, gingerly across the bridge and in the blatant October lighting, to be asked."

I wanted to cry along with her to hear that the paranoia is grounded in truth. I'm so glad for that third, "just right" goldilocks doctor.

Thank you Caren and to all the other amazing passionate women working to ensure this hurt doesn't happen to anyone else! Books like this are a lifeline.

[Manon Chevalier · Rating 4 out of 5]

Er valt iets over te zeggen. Jammer dat vrouwen ziek worden omdat ze de maatschappelijke verplichting hebben om anticonceptie te regelen, tijd dat mannen ook wat meer verantwoordelijkheid opnemen

[Phoebe Mol · Rating 4 out of 5]

discovering caren beilin is one of the best things that's happened to me lately !! I haven't read anything this explicitly "feminist" (in a very cis femme fuck men way) in a while lol (feels like putting on an old sock I now see has tons of holes in it). favorite part was the coffee enema chapter & discourse about reading while doing an enema.

[Rachel Renbarger · Rating 4 out of 5]

I love the idea of making blackfishing a verb and using this format (personal essays, blogs, correspondence with "real people") to blackfish something important like this. As a person who has also had MANY issues with the IUD, I found this text validating. However, I can imagine people who haven't had issues with it might require additional research to believe it.

[Kailyn · Rating 5 out of 5]

4.5. A stunning work of creative nonfiction that explores the subjects and connections of pain, women, chronic illness, and medical gaslighting in unique, eye opening ways. My one complaint is that it primarily focused on the experiences of cis women, although that could be because it is part memoir. Reminded me a lot of Lydia Yuknavitch's "The Chronology of Water." I'd be lying if I said some of this didn't go over my head, but some of the observations really blew me out of the water.

[Laura · Rating 3 out of 5]

I was curious about this book because I’ve had a Paragard for 6 years that I fought to get, and I also had many years of being besties with the rheumatologist (real ones know that means waiting months to get an appointment and then when you finally see them they spend 10 min with you, don’t make eye contact, and tell you to take 800 mg of tylenol every hour). Caren Beilin had a copper IUD for only 6 days and she believes that it triggered Rheumatoid Arthritis. Her goal with this book is to do for the IUD what the Blackfish documentary did for Seaworld (this title was awkward to me, I have seen the doc but my current association with the term is when influencers borrow from black aesthetics and get lip fillers and tan in order to look more racially ambiguous). The book is in that classic autotheory literary reference format. The sections are split up with comments from forums written by women suffering from the effects of the IUD.

I’m usually a fan of this format because I make a big list of all the references and end up learning a ton of things to add to my to-read list. I do get a little fatigued from stuff like “the unread books are my slaves” “society needs the sign of the cunt” and whatnot but it generally comes with the territory. I also liked the testimonial comment interludes, they both strengthen her claim and also represent the alternative system of care that chronically ill people, particularly women, have carved out online when traditional medical avenues have failed them.

I had the opposite experience as Beilin– I had a lot of chronic pain issues earlier in life pre IUD and now I’m feeling much better. I don’t attribute this to the presence of my IUD, but I thought it was interesting that I had a somewhat similar experience in reverse. I have a dramatic insertion horror story– it had to be immediately removed at the clinic and redone in a hospital because there was nearly a uterine perforation–but have since been happy with it. I had never heard of anyone having a really bad experience as Beilin described. I had no idea this was a problem but I suppose it makes sense. It’s a foreign object in the body. I really wanted the paragard because I was sick of hormonal birth control, and I never thought of metals as anything but inert. I never stopped and thought, if the whole reason it works is that it’s toxic to sperm, how is it not going to be toxic to me?

I will admit I began reading this somewhat combatively. Which is exactly the opposite of what I am supposed to do. The whole concept is to believe women, believe anecdotal evidence because the scientific medical industrial complex doesn't understand or even care to understand women’s bodies. I am generally in agreement. I understand the distrust of western medicine and of course that’s all in alignment with my worldview that profit rather than healing is the motivation of our current medical system. But I also spend so much time lurking on forums which has made me very skeptical of alternative medicine. Anyway, I started feeling uncharitable while I was reading this, because if her claim is largely anecdotal, then I have my anecdotal refutation that I’m fine. Part of that is self-protective, because I am pretty positive that had I read this 6 years ago when my IUD was just inserted and I was generally unwell in a way I no longer am, I feel confident that this information would have psychosomatically induced a similar fate.

I thought of Leslie Jamison’s essay about Morgellons disease frequently while reading this book. ( https://harpers.org/archive/2013/09/t... ) Jamison attends a Morgellons conference in an attempt to understand empathizing with someone while also not believing them. When she tries to be more empathetic, she finds herself increasingly paranoid and is unable to believe them without also feeling it herself. “Inhabiting their perspective only makes me want to protect myself from what they have. I wonder if these are the only options available to my crippled organs of compassion: I’m either full of disbelief or I’m washing my hands in the bathroom”.

This isn’t to say that I don’t believe that Beilin’s RA was triggered by the IUD. Of course it’s possible and she knows her own body better than anyone. But I just take issue with the goal of this book to prevent others from getting it, because I personally had a much worse time on other forms of birth control. And yes, she acknowledges that there are people who are happy with the IUD, but there is a tone on both the podcast and the book that’s like, “if you aren’t having problems with it now, you might later”. As I said, my defensiveness is partially out of fear. Of course the real message is that people need to be more aware of the potential downsides of the IUD and assess their family history and personal risk. I had a pretty harrowing experience getting my IUD, and I still would rather go through that again than deal with what hormonal birth control did to my brain. The real REAL message is that there should be more research, more funding and more options for reproductive health.

I don’t know if it really matters if the IUD really truly scientifically *caused* her RA. For Beilin the IUD is a symbol, a lightning rod for her anger at the mistreatment of women, the dismissal of pain, the history of medical malpractice, the suffering. Beilin references a story by Borges in which a woman kills a man who she says raped her. He did not, but she gets away with it because “in substance it were true–it is true that men rape women”. If Beilin were to get some sort of test done tomorrow that definitively proved that the IUD did NOT trigger her RA, I don’t know if anything would change for her other than not having that pinpoint.

But that would undermine her crusade of preventing others from getting an IUD. But what does crusading about this even do? “Suppose we were sure of every element of a conspiracy…what would we know then that we don't already know?” 139 . This is something I think about all the time. “Paranoia for all its vaunted suspicion acts as though its work would be accomplished if only it could finally, this time, somehow get its story truly known” 142. Sure, this is great for people to read if they’ve been struggling and now have a possible cause. In Beilin’s case the removal of the IUD did nothing to lessen the effects, it was a done deal, so what is the use of knowing the cause? I guess it is good for people to know that there are potential downsides to the IUD when it’s generally touted as the solution to all the suffering that comes with hormonal BC. But there isn’t a way of knowing for sure until you try it, and then once you’ve tried if you are going to have a bad reaction then you’re screwed for life.

So, I understand what she’s trying to do here, I believe that she is suffering and genuinely wants to prevent others from going through this, and I absolutely agree that if someone has a family history of autoimmune disorders they should be warned about all of the possible side effects. But I also am happy with my paragard and do not want the device banned. The alternatives, for me, are much worse. What is the solution? Will I get my IUD taken out when I’m ready to have a child and feel like a veil has been lifted? It is upsetting to know that I will never know my younger body in a “natural” state until I’m ready to have kids, wherein I will be preparing for a significantly deviant bodily experience. But the Paragard is the best option for me in the meantime, because better forms of birth control aren’t likely to exist until I’m menopausal. I guess I join Beilin in anger that we have to make these bad choices at all.

[Cass (the_midwest_library) · Rating 2 out of 5]

3.5

This is a hard one to rate. I thought the prose was complex and well written, and I liked the authors take on the "Blackfish" movement stemming from the Netflix show. I also agree and was empathetic towards the notion that copper IUDs need more research and women's health in general is underserved. I did however find some of the excerpts from the support groups to have an off tone. There are passages and excerpts from the book that I don't think paint an objective representation of medical risk, statistics, or medical fact. That being said it was a thought provoking read.

[Aaron Shulman · Rating 5 out of 5]

Fearless, searing, provocative, poetic, beautiful, harrowing--I could go on with more adjectives to describe this incredible, important, and moving book, but I'll stop there. Beilin is a force to be reckoned with.

[Rachel Cassandra · Rating 4 out of 5]

I appreciated the subject matter of the book. Found the tone to be a bit opaque at times and I wish there was a little more grounding in reporting and history.

[C-Rizzle · Rating 2 out of 5]

At times, this was hard to read. I didn't understand enough of the literary references to probably appreciate what the author was trying to fully convey but I did enjoy some lines. Notable quotes:

" A painter should write. A writer should read. No woman should need envy a sexual freedom that begins an inflammatory process in her womb." PG 41


" I'd like to hold my finger like a monolith out. I want to accuse men, all men, of everything, and be a worthy witch ( a killable woman, at last)." PG 116

As someone who suffered thru a copper IUD and multiple hormonal IUDs, I was drawn to the title. Once again, I am filled with rage that men ( for the most part) live unscathed and remain unaware of the pains women go through, as well as the anxiety a disappointing doctor's visit can bring.

[Sarah · Rating 4 out of 5]

Basically as soon as I heard this book exists I ordered it from the publisher. Reading it while listening to "The Argonauts" was a good illustration of just how influential Maggie Nelson is. "Blackfishing the IUD" is also a mix of scholarly references, literary references, and personal history--along with other people's personal histories of the IUD.

Fair warning: if you don't already know the medical system is biased against women and you know little about the history of contraceptives, this book will blow your mind. For those of you who do already know, you'll just be that much madder than you were before.

[Charlie · Rating 4 out of 5]

4.5 Stars. It feels obvious to call Caren Beilin's Blackfishing the IUD 'searing' because that is the very goal of the book: to sear, to alter, the image of the IUD permanently in our head. It is a polemic, and as such doesn't care to measure its response. Reading the ways in which OBGYN doctors disregard women's concerns about the ways their IUDs are altering their bodies' functionings does not inspire temerity in one's response. The few reservations I have in response to the overall execution of the book pale in comparison to that fire that Beilin captures and passes on to us, and it performs a grave service in order to show us that the IUD is not a magic bullet solution.

[Leah · Rating 3 out of 5]

I wish this book weren’t branded as being entirely anti IUD. The concerns about copper IUDs are absolutely valid but I would have appreciated a more nuanced and more balanced approach to our understanding of different IUDs long terms side effects. I appreciate this as a memoir of yet another woman facing lifelong consequences due to lack of research about women’s reproductive health but this is a book about copper toxicity and RA and a call for better research not a clear enough or convincing enough IUD = toxic argument.

[milo · Rating 4 out of 5]

Mêle autobio, recherche médicale, témoignages, œuvres et biographies d’artistes autour des effets secondaires de l’empoisonnement au cuivre après la pose d’un stérilet, et de la polyarthrite rhumatoïde. Ça rappelle Maggie Nelson dans la forme, ça se lit vite et ça fait bader (enfin si vous avez des maladies auto-immunes *et* des problèmes après la pause d’un stérilet, ça va vous faire errer sur PubMed à la recherche d’informations pendant quelques jours).

[Jenny · Rating 5 out of 5]

This book is definitely something that every woman needs to read. It's just excellent writing on top of the fact that it emphasizes the point that women need to take control of their bodies and health. Chronic pain is real and people who experience it in any form need our support and love. I can't wait to read everything Caren writes.

[Kate · Rating 2 out of 5]

Chronicles the experiences of several women, chiefly the author, who believe that the copper IUD caused, catalyzed or exacerbated their rheumatoid arthritis, depression, suicidal ideation or other maladies, as well as the apathy or mistreatment that they believe they received from medical professionals.

"No doctor cannot not know that a cure is never a return." —Georges Canguilhem (whose name is misspelled throughout the book but whose theory of disease buttresses its most incisive moments)

[Steph]

I would have loved a more scientific, research-based look at the copper IUD to make this feel more factual than anecdotal (because some of the anecdotes actually were hard to follow), but the message at the root of things is what stood out to me: that women’s agency is removed when they aren’t given what they need to make informed medical decisions or believed about their own bodies.

[Repna]

Very interesting subject that I have personal connections to, but did not connect to the literature / theory references nor the main personal story that was added to the mix

[Grace Heymsfield · Rating 3 out of 5]

Really interesting maybe not for intended reasons - wary of the conclusions the author draws but good reminder of the power / importance of medical anecdotes

[Olivia Spring · Rating 5 out of 5]

finally got my hands on this and omggggg

[H · Rating 5 out of 5]

A visceral stunning brilliant collage…

“I did not know that form is pain” (164)

“He never writes that anything ever is like a woman, and it’s my favorite thing about him” (165)