Blackfishing the IUD

We are on a continuum of an increase of more and more women, and people with uteri and/or vaginas, becoming insistently expressive and descriptive about lived experience, about medical gaslighting and injustice, and about actual pain. So we’d like to recommend another podcast that’s doing similar work to ours here and one that has truly illuminated a hidden and yet so common condition that people are struggling with, not only because it’s a really difficult thing to manage, but because of shame, gaslighting, inattention, lack of research—all of the things.

The podcast is called Tight Lipped. Tight Lipped is a storytelling podcast that’s creating a public conversation about vaginal and pelvic pain. In the US, up to 1 in 4 people with vaginas will have chronic pain with intercourse at some point in their lives—yet most of them will struggle to get a diagnosis, treatment, or be taken seriously. Tight Lipped wants to know: If so many women have conditions that cause pain with penetration, why are none of us talking about it? Each episode peels back another layer of shame and secrecy. The show features personal stories of pain with insight from experts about sexism in our healthcare system.

Tight Lipped is hosted by Noa Fleischacker who is navigating her own healthcare journey with vaginal pain. In this episode, “The Trust Gap,” Noa, talking with journalists and experts like Maya Dusenbery and Paula Kamen, takes a look inside the exam room to try to understand why so many people with vaginas that hurt have to seek out dozens of doctors before getting a diagnosis, let alone a treatment plan. We hope you’ll take a listen!

“I wanted to connect my rape to my sickness, but I also wanted to connect all the various ways that women are hurt by men, and patriarchy, and the patriarchy of Western medicine, in our society.” In our final episode of this season of Blackfishing the IUD, host Caren Beilin gets on the phone with Amy Berkowitz, author of Tender Points, originally published in 2015 and just rereleased last year. Named after the diagnostic criteria for fibromyalgia, Tender Points is a book-length lyric essay exploring sexual violence, chronic pain, and patriarchy through lived experience and pop culture. Caren and Amy share the back-stories that led them each to the subject of chronic illness and their unique processes as writers. They discuss tales of medical gaslighting, reclaiming the conspiracy, and the empirical medicine and collective care practiced in online support groups and message boards. A part of this interview was excerpted on Lithub in November, 2019. Berkowitz is also an editor and co-organizer of the groundbreaking SICK FEST, a 2016 festival featuring, among other events, performances and readings by chronically ill and disabled writers and activists, and is currently working on a novel.

“In my mind, it's just like any other situation where black women are invisible, and yet we are vital to the story and vital to the outcome. We’re the central part of the story, yet we have no voice in the telling of that story.” In this episode of Blackfishing the IUD, we get the pleasure of talking with author, Tyrese L. Coleman, whose 2018 debut collection of stories and essays, How To Sit, was nominated for a 2019 PEN Open Book Award. Amidst childcare, Coleman shares with us the complex and shocking history of Marion Sims, the father of modern gynecology, who developed the foundations of what is now standard practice by operating and experimenting on the bodies of enslaved Black women—the known names of whom are Lucy, Anarcha, and Betsy. Through her critical and profound written work, Coleman confronts the racism, sexism, trauma, and active resilience at the core of this history, while articulating how it still affects Black women, like herself, receiving medical care. She and host, Caren Beilin, discuss the disbelief, ridicule, and even outright contempt with which the medical profession views women’s (and especially Black women’s) health, as well as the power of giving voice to these experiences. “It was important to me to give Lucy a voice, because I have often felt voiceless in situations with medical professionals.”

“It's important to me to get the facts right, and I don't see that at all at odds with a very deep and radical belief in women, in women’s stories and anecdotal evidence.” In this episode, host Caren Beilin has the opportunity to talk with author and medical researcher, Maya Dusenbery, author of the groundbreaking book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. As Caren puts it, this book is “a heap of validating research that confirms the kinds of biases that go on in conventional medicine.” Thrilled to have the chance to talk with her, Caren asks Dusenbery some fundamental questions about the epidemic of autoimmunity, medical research, and gendered bias, as well as Dusenbery’s own battle with RA and autoimmunity. They discuss the importance of taking women’s personal stories seriously and seeing them as scientifically valid, the processes of writing their two distinct yet related books, and a 2017 study making a connection between autoimmunity and the copper IUD. “The common denominator,” says Dusenbery, “is this distrust of women's voices.”

"I didn't have any support from physicians, my husband, or my family, so finding women that could understand what was going on with me and were experiencing the same thing was of great support." From her home in Argentina, activist and filmmaker, Florencia Kot Hansen, talks with host Caren Beilin about her personal and cultural struggles with the IUD, and how this led her to found the multilingual listserv, "Copper IUD Detox," a resource for now thousands of women who have been negatively affected by the copper IUD. The two discuss the growing body of research around copper toxicity, feminism and reproductive health activism across language barriers and national borders, and her forthcoming documentary on the subject, "When Bodies Talk."

"They say that, you know, one in a million people will get pregnant when they have an IUD—but it happened to me." Executive producer of this podcast, Claire Mullen, shares her own life-changing experience with the IUD and why she got involved in this project. In the conversation, Mullen and "Blackfishing the IUD" host, Caren Beilin, discuss how the IUD suddenly changed both of their lives and profoundly affected them, specifically in ways that made them both want to make work around it. "The more I talked about it," says Mullen, "the more I realized that there were other women in my life who had gotten pregnant with an IUD." The two discuss gossip, betrayal, experiences in doctor's offices, and the stereotype of the paranoid, hypochondriac woman. "Regardless of whether it's happened to you or not, I just don't think we talk about it enough. And that's what it's changed in my life, I've been much more open to talking about those kinds of things."

In conjunction with the release of the book, Blackfishing the IUD, Wolfman Books is releasing a podcast to more broadly explore and shine a light on women’s experiences around reproductive healthcare and the medical industry. Hosted by author, Caren Beilin (Spain, The University of Pennsylvania), and produced by audio producer, writer, and film photographer, Claire Mullen (Reveal, Radio Ambulante, 99% Invisible), Blackfishing the IUD will feature a series of intimate conversations with authors, journalists, and experts whose work engages these topics in crucial and illuminating ways.