There is a moment in Cory Doctorow's 2025 book Enshittification: Why Everything Suddenly Got Worse and What to Do About It where he pauses to pick a fight with Audre Lorde. He calls her "far smarter than I am about nearly everything," then insists that one of her most quoted observations, that the master's tools will never dismantle the master's house, is "manifestly wrong." His argument is that regulation, antitrust law, interoperability standards: these are the tools we need to dismantle the tech monopolies that have captured and degraded the internet.

I first encountered this weird argument on a Mastodon thread years ago, and it never sat right with me. It would be a defensible claim if that was the argument Audre Lorde was making in the first place. Something strange happens in that paragraph, something worth sitting with: a writer invoking a Black lesbian feminist theorist in order to dismiss an argument about tech platforms, which she never made. The phrase has been borrowed, stripped of its roots, and sent out to do labour it was never meant to do. And in the act of rebutting a meme, Doctorow becomes part of the meme's problem.

Doctorow treats Lorde's line as if it were a claim that instruments of established power can never be used against that power; he then rebuts that claim by pointing to antitrust, regulation, and interoperability. But that is not the argument Lorde was making in the speech he invokes.

Enshittification is a serious and important book, and the broader project of understanding platform decay as a structural, political phenomenon rather than a personal failing or a market accident is exactly the kind of thinking we need. I will argue two things in this blog post: first, that Lorde's "master's tools" speech is routinely misread in tech discourse as a general proposition about rejecting reform; second, that taking her actual argument seriously would not invalidate enshittification but deepen it, by asking whose experience of technological harm the framework centers, and whose it treats as supplementary.

On September 29, 1979, Audre Lorde stood at a podium at New York University at a conference celebrating the thirtieth anniversary of Simone de Beauvoir's The Second Sex. She had been invited at the last minute to respond to a panel, the only panel in the entire three-day conference where Black feminists and lesbians had been given a voice. She had been listed on the programme not as a speaker but as a "consultant." The organizers had corralled the women of colour and the queer women into a single slot on the final day, the implied message being that these perspectives were supplementary rather than foundational.

Lorde's speech, later published in Sister Outsider as "The Master's Tools Will Never Dismantle the Master's House," reads in this context not as a claim that reform is impossible or that working within systems is always futile, but as a specific intervention directed at white feminist academia, delivered from a position of structural exclusion, about how the very structures of knowledge production (conferences, panels, theoretical frameworks, the categories of analysis) were reproducing the hierarchies they claimed to oppose.

In this reading, the "tools" Lorde was naming were not literal instruments but epistemic ones: the frameworks of thought, the methods of inquiry, the structures of inclusion and exclusion that had been built by and for a particular kind of subject (white, heterosexual, Western) and that continued to operate even within movements ostensibly committed to liberation. The questions she poses make this frame legible: what does it mean to conduct feminist analysis while systematically excluding the voices of poor women, Black women, Third World women, lesbians? What does it mean to theorize liberation using categories that treat those exclusions as incidental rather than structural?

"What does it mean," she said, "when the tools of a racist patriarchy are used to examine the fruits of that same patriarchy? It means that only the most narrow perimeters of change are possible and allowable."

Her words suggest that such analysis could produce, at best, incremental adjustments within the existing order. It could let you "temporarily beat him at his own game," but not the genuine change, the "dismantling of the house", that would require what the existing frameworks seemed structurally incapable of generating: a reckoning with difference, with the knowledge that comes from the margins, with the ways that interconnected systems of oppression cannot be addressed one at a time by theorists who treat their own particularity as universal.

This is not a comfortable argument, and most crucially, it was not addressed to tech companies or policy makers or open source developers. What strikes me most about it is who it was addressed to: white feminist scholars, the people ostensibly on the same side, named as part of the problem. That specificity is often absent from contemporary tech discourse citations of the phrase.

From my perspective, in free software and adjacent communities, the phrase has taken on a life entirely detached from its origins. I myself have probably engaged with it that way, to be completely honest. Micah White described it as "the atomic bomb of discussion enders," a phrase so potent it can be applied to absolutely any argument about strategy and method, often by people who have never encountered the full speech. White's concern is not with Lorde's argument but with what has been done to it: a revolutionary provocation flattened into a reflexive shutdown. It shows up most often as a thought-terminating cliché: using corporate infrastructure, proprietary platforms, or mainstream legal mechanisms to advance liberation goals is self-defeating by definition. The master's tools. End of conversation.

And it shows up as a straw person waiting to be knocked down. This is, I believe, what happens in that Enshittification paragraph: cite the phrase, acknowledge the authority of the speaker, then dismiss the claim as "manifestly wrong" on the grounds that regulation and antitrust law demonstrably can constrain monopoly power.

I'm not the first person to point this out. A review in DesignWhine called the Lorde passage "a particularly discordant note," observing that Doctorow's rebuttal addresses tech platforms rather than the "frameworks of racial and gender oppression that Lorde was addressing."

Both the use of the phrase as a cliché and as a straw person share a common structure. They treat it as a proposition about strategy, a claim about whether instruments of power can be redirected, and then debate it as such. In doing so, they evacuate the phrase of its specific context. Read against the speech itself, Lorde's argument seems less concerned with whether antitrust law can break up monopolies and more with whose knowledge counts, who gets to define the problem, and what gets systematically erased when liberation movements reproduce the exclusions of the systems they are opposing.

The sociologist Boaventura de Sousa Santos coined the word epistemicide precisely to name that kind of destruction: the killing, silencing, or devaluing of a knowledge system, what he called the "death of the knowledge of the subordinated culture."

Doctorow's enshittification thesis, at its core, is about how platforms extract value from users and suppliers in a structured, predictable way once they have achieved sufficient monopoly power. It is a story about the concentration of capital, the elimination of competitive discipline, the regulatory capture that allows monopolists to write the rules of their own industries. It is, in important ways, a structural analysis of power.

But there is a structural analysis that Enshittification doesn't seem to be making, and that taking Lorde's speech seriously rather than as a meme might push us toward. Whose experience of platform decay is centered in the enshittification story? Whose experience is supplementary? When we talk about the internet "getting worse," what baseline of "better" are we implicitly invoking, and for whom was it better?

The enshittification story, at its most powerful, describes a process by which platforms that once served users well came to exploit them. But this framing assumes a prior state of genuine service, a golden age of the open internet, that was for many people never particularly golden. The early internet was structured around the assumptions of its architects: predominantly white, male, Western, educated, and abled. The exclusions weren't mere flaws; they were perhaps, if we're being generous, deeply structural tendencies that were never seriously interrogated.

Consider one concrete example of what the enshittification framing tends to make invisible. In Nairobi, Kenya, described by one journalist as ground zero in a battle over the future of content moderation, young workers from informal settlements were employed by Meta's outsourcing partner Sama to review graphic content including beheadings, child abuse, and torture, for wages of between $1.46 and $3.74 per hour. A clinical assessment submitted to Kenya's Employment and Labour Relations Court in late 2024 found that 81 percent of these workers had developed severe PTSD. 185 of them have since sued Meta and Samasource Kenya. In a 2024 townhall, Kenyan President William Ruto reportedly assured Sama: "Now we have changed the law, so nobody will take you to court again on any matter."

These workers do not fit neatly into enshittification's consumer-facing timeline of decline. The platforms had not "turned against" them after an initial period of serving them well. They were constitutive of the platform's operation from the start, absorbed into its labour structure precisely because Kenyan law offered weaker protections and Kenyan wages were lower. The "good" platforms for users in the Global North was built, in part, on conditions that were never good for workers in the Global South.

In The Palestine Laboratory, the journalist Antony Loewenstein documents how the Palestinian territories have functioned for decades as a testing ground for surveillance and control technology, which is then exported to governments worldwide. The Pegasus spyware developed by the NSO Group, the facial recognition systems deployed across Hebron, the AI targeting tools used in Gaza: none of these began as consumer products that later turned exploitative. They were designed from the outset as tools of occupation and population control, refined through use on Palestinians, and sold as battle-tested to authoritarian regimes.

This is not the same technological domain as consumer platforms, but it reveals a parallel point: for many users, digital systems did not begin in service and then decay into domination; domination was the design premise. This directly raises important questions about the enshittification timeline. The technology, more often than not, arrived already serving the interests of those who commissioned it. And crucially, the same dynamics that make the Global South available as a testing ground (weaker legal protections, cheaper labour, populations with less political power to push back) are what make the enshittification story possible in the first place.

This is not an argument to reject the enshittification analysis. It is an argument to extend it. A decolonial critique of technology is not simply "the internet was always bad." It is rather: the conditions that made the internet harmful to specific communities were never peripheral to its design; they're an integral part of it. And any politics that aims to restore something like the pre-enshittification internet without reckoning with those conditions is doomed to reproduce them.

The decolonial tradition in technology scholarship has been doing this work for many years, often cited but rarely absorbed in mainstream tech discourse.

In Race After Technology: Abolitionist Tools for the New Jim Code, Ruha Benjamin develops the concept of the "New Jim Code," her term for technologies that reproduce existing inequities while presenting themselves as more objective and progressive than the discriminatory systems they replace. Benjamin's argument is a methodological one about how racism operates through algorithms. She writes, "racism thus becomes doubled, magnified and buried under layers of digital denial." One cannot identify or begin to address that if their analysis begins from the assumption that the technical layer is neutral.

In Algorithms of Oppression: How Search Engines Reinforce Racism, Safiya Noble makes a related case about search. Her argument is against the fiction of their neutrality. "Google creates advertising algorithms, not information algorithms", she writes, a distinction that matters enormously when those algorithms are treated as a public information resource by schools, journalists, and governments. The criteria of relevance built into search are not neutral, and treating them as such reproduces the structures of erasure they encode.

In her 2020 paper "Algorithmic Colonization of Africa", cognitive scientist Abeba Birhane argues that while traditional colonialism used brute force, algorithmic colonialism operates through corporate agendas: "state-of-the-art algorithms" and "AI-driven solutions" to social problems that reduce complex cultural and political realities to things that can be measured, quantified, and fixed. This can be clearly seen in the Nairobi case: the content moderators' psychological crisis was not incidental to the platform's AI safety work, it was the mechanism by which that work was accomplished.

Nick Couldry and Ulises Mejias take long historical view in Data Grab: The New Colonialism of Big Tech and How to Fight Back. Their claim is that data colonialism is not metaphor: it is structurally continuous with historical colonialism, with data replacing land as the resource being seized. "Like historical colonialism," they write, "today's tech corporations have engineered an extractive form of doing business that builds a new social and economic order." This is perhaps the most direct bridge that extends the enshittification critique into the decolonial one. Doctorow asks how platforms extract value; Couldry and Mejias ask what kind of thing that extraction is in historical terms.

I believe that Benjamin, Noble, Birhane, Couldry, and Mejias are engaging, in Lorde's terms, in the epistemic tools: not only the legal mechanisms or the technical architectures, but the analytical frameworks that tell us what counts as a problem, what counts as evidence, and whose testimony counts as knowledge. And none of them are arguing for inaction. Even Benjamin's subtitle, Abolitionist Tools, directly says that analytical tools can and should be turned toward liberation. But those tools have to be built with different assumptions than the ones baked into the systems being analysed.

What links these works is not a common slogan but a common method: they refuse to treat technical systems as neutral containers and insist that the categories through which problems are defined already encode relations of power. In that sense, they extend Lorde's challenge from feminist theory to technology critique.

This is precisely what gets lost when the phrase "the master's tools" becomes a debate about whether antitrust law is effective. The question is not whether antitrust law can break up a monopoly. The question, the one the speech seems to me to be asking, is whether breaking up a monopoly by itself constitutes the "genuine change" Lorde invoked, or whether it simply rearranges the furniture in a house whose foundations remain unchanged.

There is something particular that happens when figures from Black feminist, queer, or decolonial traditions are cited in tech discourse. The citation tends to operate as credentialing rather than engagement, a way of demonstrating political seriousness before proceeding to make the argument you were going to make anyway. In that passage, Lorde is simultaneously "far smarter than I am about nearly everything" and also wrong about the thing that matters for the argument at hand. The invocation and the dismissal occur in the same breath.

This is, structurally, a version of what Lorde was diagnosing in 1979. The conference organizers had invited her. They had put her on the programme. They had formally acknowledged that her perspective had a place in the conversation. But they had put her in the one slot reserved for people like her, assigned her to respond to work that had not engaged with her tradition, and positioned her contributions as supplementary to a theoretical apparatus that remained unchanged by her presence.

The parallel is not exact. But the structure (incorporate, cite, proceed) is recognizable. And recognizing it is not a reason by itself to reject or abandon the enshittification analysis. It is a reason to take Lorde's actual argument seriously enough to let it do something to the analysis, rather than neutralizing it with a compliment.

I would hate for this critique to be read as "enshittification gets it wrong." I believe that enshittification is doing something real and important, and the feminist and decolonial traditions have tools that could make it more powerful, more accurate, and more honest about whose experiences it centers. To reject it, rather than invite it to engage, would in my view be a betrayal of what Lorde stood for.

In the speech, Lorde tells us that the first patriarchal lesson is "divide and conquer," and that the task is to "define and empower" instead. It places definition (understanding the actual structure of the problem including the parts that are uncomfortable or that implicate people within the movement) as prior to empowering. And defining requires the kind of analysis that comes from the marginalised: not as a supplement to the real analysis, but as a correction to its blind spots.

The question is not whether to use antitrust law or interoperability standards to fight platform monopolies. Use them to their fullest extent. The question is whether we can also build the analytical framework that asks why the platforms were built the way they were, who paid the costs that made them profitable, and what "better" actually looks like when we account for the full range of people who will live in whatever comes next.

What Lorde left us with, is not the answers to those questions but something more valuable: the insistence that they have to be asked, and that asking them requires centering the people for whom the stakes are highest. The "master's tools" speech, in its context and practice, is the antithesis of a thought-terminating cliché. Let's stop treating it that way.

宮ノ下駅 // Miyanoshita Station

In the coming years, HBO wants its new Harry Potter series to become "the streaming event of the decade" as it adapts each of the franchise's seven original books. The show could very well become a hit that captures the imaginations of a new generation of fans who weren't there for the first wave of Pottermania that intensified with the releases of each book and Warner Bros.' subsequent film adaptations. And if this Harry Potter is a success, it could give author J.K. Rowling a reason to consider writing more stories set in the magical world that turned her into a billionaire.

But all of that hinges on whether people will actually watch HBO …

Read the full story at The Verge.

To viewers grieving the death of Stranger Things—by death I mean not the finale of the Netflix series this past January, but the show’s unfortunate decline, after the third season, into a plodding, convoluted ghost of its former self—let me offer something of an analgesic. Travel with me, if you will, back to the superb first season, where Winona Ryder’s Joyce Byers, a broke, chain smoking, seemingly delusional mother, opens a can of paint and scrawls the alphabet onto a wall of her home. Joyce hopes her missing son will use the letters to communicate with her from the Beyond. Ryder’s performance would count as one of the most convincing portrayals of insanity in recent screen history, if it weren’t for one thing: Joyce is not mentally ill. Her son is trapped in the Upside Down, and her love is so powerful, she’s able to ignore the rules of logic and perceive what no one else can.

I became a fan of Stranger Things around the time I became, in my own way, Joyce Byers. To certain people in my life, I had recently morphed into a neurotic, monomaniacal woman. Not because I thought my child had been kidnapped by supernatural beings, but because I was convinced I was sick even though no tests could prove it. At 34, during my first year of a doctoral program in literature, I began to experience an electric-shock like pain in my pelvis. Sitting exacerbated the pain, so I bought a standing desk. Exercise beyond walking hurt, so I gave up biking, yoga, and rock climbing. Through regular physical therapy and rest, I managed the pain for several years. Then, in early 2020, my symptoms mysteriously worsened.

By the end of 2020, simply getting out of bed was excruciating. I left my graduate program with my dissertation halfway done. From bed, I booked appointments with a new round of doctors: radiologists, pain specialists, pelvic specialists. Everywhere I turned, practitioners doubted me when I said walking and standing were excruciating. A psychologist whom I was required to see as part of my treatment at a pain clinic asked if my parents had treated me well, hinting the source of my symptoms resided in childhood trauma. In her assessment, she concluded, “Ms. Cutchin has some symptoms and behaviors known to be unhelpful for pain including: some fear, avoidant behavior, pain anxiety.” 

When a physical therapist saw me limping, she said, “Ask yourself, ‘Why do I feel I have to walk like this?’”

Worst of all, someone close to me hinted I was unconsciously refusing to walk because I “liked the bed and the bath.”

Holed up in bed—a bed that had become for some a symbol of my mental instability—I began watching science fiction. I’ve long been a fan of murder shows and spy thrillers, series in which the culprits are certifiably human and logic more or less carries the day. I binged The Americans, The Bureau, and Bosch, along with some less illustrious procedurals. Then, for want of new programming—it appeared my pain could outlast even Peak TV’s flood of content—I began to watch sci-fi

Not only did sci-fi keep me entertained; it gave me strength. A recurrent trope of sci-fi is the woman who is not believed. There’s Joyce Byers and her can of paint. Iconically, there’s Sarah Connor (Linda Hamilton) in Terminator 2, locked away in a mental institution because she claims—accurately—that cyborgs from the future want to kill her son. In Robert Zemeckis’s 1997 film Contact, based on the book by Carl Sagan, Ellie Arroway (Jodie Foster) tells a senate committee she traveled through wormholes to meet an alien disguised as her father. The (male) chairman points out that video evidence contradicts her account and accuses her of suffering from a “self-reinforcing delusion.”

Not only did sci-fi keep me entertained; it gave me strength.

Also delusional, or so a male colleague insists, is DCI Rachel Carey (Holliday Grainger) in the excellent near-future dystopian series The Capture. When DCI Carey confronts a superior, Commander Danny Hart (Ben Miles), with her suspicion the UK government is altering CCTV footage in real time using deep-fake AI technology, he wastes no time gaslighting her. “You’ve had a shock tonight, Rachel. Why don’t you get some rest.” If I had a dollar for every time I’ve heard a male character tell a woman she needs some rest, I’d be able to upgrade every streaming subscription to premium. In the German limited series The Signal, it’s a case of “space sickness” that plagues astronaut Paula (Peri Baumeister), or so a dismissive colleague would have her believe. Aboard a space shuttle, Paula hears a signal she knows can only come from aliens. She records the signal, but when she plays the recording for the rest of her team, there’s nothing on the tape. Her (once again, male) colleague, Hadi (Hadi Khanjanpour), who initially heard the signal, too, tells Paula she’s unwell. “Go lie down.”

Riddled with pain, facing disbelief from those around me, the stories of Joyce, Paula, DCI Carey, Ellie Arroway, and Sarah Connor brought me solace, and a shred of hope. I belonged to a genre of female characters who had to fight to be believed. In the worlds these narratives portray, women’s claims are outlandish, otherworldly, weird, and also true. Eventually, each character finds someone who believes her. Sometimes it’s a man, like Jim Hopper (David Harbour) in Stranger Things, who learns to trust Joyce. Sometimes it’s a woman or girl: Paula’s most steadfast advocate in The Signal is her disabled nine-year-old daughter, Charlie (Yuna Bennett), who, working with her father, figures out the time and place of the aliens’ arrival and proves her mother right.

Watching these films and shows between visits to doctors bent on dismissing me, I grasped sci-fi’s genius: It taps into our culture’s deepest anxieties about the trustworthiness of women. In our real-world political climate, when a woman speaks her experience, whether she’s talking about sexual abuse, harassment, or illness, we wonder, Where’s the proof? And yet, our standards of proof are devised by the same systems—legal, educational, medical—built by men to protect male interests. In the medical system, imaging and other tests count as “proof” of illness or pain, but such tests screen only for well-researched diseases, and what we know about those diseases largely comes from research on male subjects. No definitive tests exist for a host of conditions that predominately affect those assigned female at birth, like myalgic encephalomyelitis/chronic fatigue syndrome and Ehlers-Danlos Syndrome. A woman with this kind of disease might as well be telling her doctors: Cyborgs are coming. Aliens have made contact.

By exploring whose testimony counts as reliable, and on what terms, sci-fi provides a template for what ethical philosophers call epistemic justice. “Epistemic” refers to knowledge. In our everyday lives, we convey knowledge to others by sharing our expertise, by relating our experience, and so forth. When a speaker offering knowledge is dismissed because of who they are—a woman, a trans person, a Black or Brown person—they are wronged in their “capacity as a giver of knowledge,” as philosopher Miranda Fricker puts it in Epistemic Injustice: Power and the Ethics of Knowing. The one who speaks loses out, but so does a community of hearers who would benefit from the information the speaker seeks to convey. Sci-fi dramatizes epistemic injustice and proposes a different way: We must practice epistemic humility by taking stock of our prejudices and admitting that someone who looks and sounds different than us might be right. 

In the eyes of Western medicine, there is little stranger than a malfunctioning female or gender nonconforming body. According to The New York Times, “Women are more likely to be misdiagnosed than men in a variety of situations.” A stunning 72% of millennial women report feeling gaslit by medical professionals, a Mira survey found. If you’re nonwhite, it gets worse. Black women are less likely to develop breast cancer than white women—but 40% more likely to die from the disease due to delays in diagnosis and care. Delays in diagnosis stem partly from lack of research into women’s health. Until recently, women were considered inferior subjects to men in basically all research. “There are parts of your body less known than the bottom of the ocean, or the surface of mars,” Rachel E. Gross writes in Vagina Obscura: An Anatomical Voyage. On top of it all, there’s medicine’s age-old tendency to see women’s maladies as psychogenic in nature—think of the prevalence of the hysteria diagnosis in the nineteenth and twentieth centuries.

Today, women are less likely to be told our pain or fatigue is “in our heads.” Instead, in a sophistry-laden twist, we are told our symptoms stem from a “brain” gone haywire. According to the brain-based model of chronic pain, when symptoms persist more than three to six months with no obvious organic cause, the brain is at fault, or more precisely, a “maladaptive plastic reorganization in central pain processing circuits.” A spate of recent self-help books and pain reeducation programs promise to teach your brain to unlearn pain via cognitive-behavioral interventions. The problem with these treatments is they fail to account for the instances when pain persists because doctors and tests miss its underlying cause. Around 70% of chronic pain patients are female. Women are more likely to suffer from underreached conditions like fibromyalgia, autoimmune disease, Ehlers-Danlos Syndrome, pelvic pain, Long Covid, Lyme disease, and myalgic encephalomyelitis/chronic fatigue syndrome. Telling a woman her pain stems from a “maladaptive” brain is today’s version of “it’s just hysteria.” 

Given sci-fi’s uncanny ability to channel and critique these medical biases, I’ve put together a quiz: Can you tell the difference between a real-life sick woman and science fiction? The following statements were uttered either in a science fiction film or TV show, or in a real-life medical setting where a female patient came in complaining of physical symptoms. Circle the correct answer:

Answer key: B, D, F, H and J are from science fiction—The OA, Manifest, Stranger Things, Terminator 2, and The Lion, the Witch, and the Wardrobe, respectively. A, C and I are from medical records shared with me by a female patient with Ehlers-Danlos Syndrome; E was uttered by the doctor of an Instagram user living with ME/CFS and POTS. G is from my own life. A noted Bay Area pelvic pain practitioner insisted I download a pain therapy app that could, he said, “re-wire” my brain so I no longer felt pain. “The app will teach you that you can’t use the word ‘pain’ any longer if you want to heal,” he told me.

I’m not saying mind-body tools aren’t helpful in managing symptoms. In the early years of my pain, I did quite a lot of psychotherapy and embodied meditation. These tools helped, especially when it came to managing the stress of illness. By the time I became bedridden, I knew I’d gone as far as I could with mind-body modalities. I told anyone who would listen I believed my symptoms had a biomechanical source, but, as time went on, I doubted that source would ever be found. After all, I’d had an MRI, the gold standard for diagnosis of pelvic disorders, and it had revealed nothing. 

Still, I kept searching. For years, I’d been hearing about a world-famous pelvic pain specialist in Arizona. Seeing him would mean traveling seven hundred miles and paying for the visit out of pocket. By early 2022, I was out of other options. A friend and I rented a van and drove seven hundred miles from our home in the San Francisco Bay Area into the Arizona desert listening to crime podcasts. Actually, my friend drove; I laid on a mattress in the back.

The Arizona doctor took by far the most careful, thorough patient history of any provider I’d seen. He recommended a round of pelvic floor botox, and, when that didn’t work, he offered a diagnosis. 

When a woman speaks her experience, whether she’s talking about sexual abuse, harassment, or illness, we wonder, Where’s the proof?

“All the signs point to pudendal nerve entrapment.” 

The pudendal nerve runs through the lower pelvis and innervates urinary, bowel, and sexual function. I’d long known my nerve was irritated. But none of the pelvic specialists I’d seen had raised the possibility it might be compressed. Compression, the Arizona doctor explained, doesn’t show up on an MRI; the nerve is too small, too hidden. Compression typically arises from a traumatic injury, or repetitive stress. The year before the onset of my symptoms, I’d biked one thousand miles down the California coast. The pressure of the bike seat against my pelvis caused scar tissue to build up around the nerve. To protect the nerve, paradoxically. 

It took 11 years from the onset of symptoms to receive the diagnosis. The treatment: a fairly straightforward decompression surgery.

Pudendal nerve entrapment is an underresearched condition that affects—you guessed it—women more often than men at a rate of seven to three. Childbirth is a common trigger. Diagnostic criteria do exist, but none of the chronic pain or pelvic disorder specialists I’d previously seen were familiar with those criteria. Pudendal entrapment isn’t common, but it’s not as rare as one might think, either. Studies indicate it affects up to one percent of the general population. Because pudendal entrapment lacks an ICD-code—such codes are used globally to classify medical diagnosess—insurance companies view decompression surgery as experimental and refuse to reimburse it. (In contrast, ICD-codes exist for “Sucked into jet engine V97.33X” and “Struck by turkey W61.42XA.”)

Broken bodies tell broken stories

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Four months after surgery, I began to see improvement. Within 15 months, I was leading a normal life again: walking, sitting, and traveling—without a van and mattress. I made plans to return to the PhD program. 

Today, I’m grateful to the Arizona doctor who took the time to listen and believe my story. I’m also, frankly, enraged when I think about the time, energy, and pain I would have been spared if the medical system had the patience and trust to take my symptoms seriously. If it had, I wouldn’t have become Joyce Beyers and spent years getting others to see the writing on the wall.