The last refuge of the informationally underserved
Why did I have to turn to Reddit for help with my miscarriage?
[Content warning: The following essay involves miscarriage. If that’s a difficult subject for you, please jump straight to the links. It’s a difficult subject for me, too. I’ve debated sharing this story here, because it’s basically … as personal as it gets! It is *not,* however, a unique story, and that’s why I’ve chosen to write about it. Thank you, as always, for reading. xx]
I got through my second miscarriage by the grace of Reddit and the story I planned to write afterward.
A version of that story ran Sunday in The Washington Post, and in full on Stateline the week before.
The story involves a drug called mifepristone, which is used — in combination with another drug, misoprostol — to both terminate pregnancies voluntarily and help pass pregnancy tissue after a miscarriage.
Research shows the two-drug combination is significantly more effective than just misoprostol, which is also commonly taken on its own, and since 2017 the professional association for American OB-GYNs has recommended the two-drug protocol. But as I report in the story, federal abortion rules, cultural stigma and an array of other factors make it difficult for miscarriage patients to access mifepristone, even in states that don’t otherwise restrict abortion.
What the story doesn’t mention is that I only learned of this issue because I couldn’t access mifepristone, myself. And worse, I couldn’t figure out why I couldn’t access mifepristone, even with the help of a brilliant friend who works in healthcare and searched for the drug on my behalf.
First, my doctor said pandemic supply chain issues had made mifepristone difficult to access. (This, I have since learned, is a fiction.) Then another doctor in the practice agreed to write the script, but said I’d have to find a pharmacy that could fill it.
Local pharmacists patiently told me, after indeterminable holds, that federal rules barred them from dispensing mifepristone for any indication. Which was weird, I thought, because the most recent articles that my friend and I read said those rules had been revised by the Food and Drug Administration.
Eventually, I ended up on Reddit — one of several last refuges-cum-rabbitholes for the internet’s informationally underserved. This was not my preferred venue for medical information: I still hold an unfashionably high regard for institutions and experts. But r/miscarriage had helped me once before, in January, when I lost another pregnancy and had a D&C. For weeks after, I felt tired and so lightheaded I sometimes swooned when I stood up. My doctor said to drink more water and test for Covid-19.
On r/miscarriage, though, and in similar forums — Mumsnet, Mothering.com — other people who’d had D&Cs shared similar symptoms. Moreover, they frequently attributed their lightheadedness not to Covid-19 (which I did not have) nor to dehydration (which I warded off with my gigantic Wirecutter-recommended water bottle) … but to anemia, which made way more sense to me, since I eat a mostly vegetarian diet.
I changed my diet to include more iron. I soon felt a lot better. Are those two facts related? I’ll never know! But I felt confident enough about the whole experience to return to the Reddit well six months later.
“Mifepristone + miscarriage,” I searched. Or “mifepristone prescription.” There’s a singular misery in the scattershot results, in the process of wading through other people’s largely irrelevant (but still terribly sad) questions. How long does bleeding usually last? When can you start to try again? Is it normal that my husband doesn’t seem all that sad? Is it normal that my doctor did Y or X?
Finally, in a post from four years ago, its author’s account now long-deleted: Getting mifepristone for medication miscarriage … anyone have an experience with this? The author, unable to get the drug from her Catholic-affiliated hospital, had turned to Planned Parenthood instead. “I can't believe I have to schedule an abortion,” she wrote, “in order to get what is considered the most effective medical treatment for miscarriage.”
I couldn’t quite believe it, either, to be honest with you — though my reporting has since confirmed that’s often true. More than 90 countries have approved mifepristone since the late 1980s — including Canada, which since 2017 has allowed any physician or nurse practitioner to prescribe the drug and any pharmacist to fill those prescriptions.
In the U.S., however, mifepristone is typically only available at hospitals, health clinics and doctors’ offices that provide abortions. A recent study found that from 2016 through 2020, just 1 percent of more than 22,000 American patients who took medication to help pass their miscarriages received the recommended mife + miso combination.
I did look for an appointment at Planned Parenthood, but the clinics were booked all week in my area. Abortion opponents would also say I could have had a D&C or waited for my body to pass the tissue on its own. But I didn’t want to spend another full day at the hospital, starving and anxious and blind without my glasses and reminding yet another overworked nurse that anesthesia makes me really, really sick. And I didn’t want to draw out the miscarriage process, loading up on super-maxi pads and confronting what I’d lost in a weeks-long series of disorienting bathroom vignettes.
So, to conclude our original saga: I never got mifepristone, myself. But I didn’t get a D&C or “wait it out,” either. Instead, I picked up consolation bagels on my way to Rite Aid, where a pharmacist handed me a paper-bagged bottle of misoprostol.
The pamphlet inside the bag concerned ulcer treatment, I only learned when I got home. No one ever told me what to do if, say, I started bleeding out or spiked a temperature. My doctor hadn’t scheduled a follow-up appointment. That made me nervous. I knew that taking misoprostol without mifepristone required follow-up surgery in roughly 1 in 4 cases.
Left to my own unhappy devices, I ate my bagel with Jason and cued up roughly two dozen episodes of SVU. We dug a heating pad out of the upstairs linen closet and pulled out the sleeper sofa in our living room. Then I searched Reddit, once again: “what to expect misoprostol.”
The internet had answers — of course it did. But why had it come to that at all?
If you read anything else this weekend
“How Citizen Surveillance Ate San Francisco,” by Lauren Smiley for Wired. I imagine that, were Charlie Brooker to ever write an episode of Law & Order, it would look a bit like this story: a twisty, ambiguous true-crime saga that sometimes veers close to parody. The whole thing kicked off last April, when multiple witnesses filmed an unhoused man beating the city’s former fire commissioner. But that clear-cut assault case grew messier (and more dystopic!) as more videos and surveillants came forward.
“Greenville Was Quiet. Then a Hometown Kid Became YouTube’s Biggest Star,” by Drew Harwell and Taylor Lorenz for The Washington Post. Is my enthusiasm for the Post’s “Creator Economy” series sufficiently obvious yet?! I think I’ve featured its installments three weeks in a row. And this week, I had to choose between this dispatch from MrBeast’s hometown and this one from an OnlyFans content “farm” in Florida. They are, to be clear, both very worth reading, but we always love a deep dive on the offline consequences of online fame. “One regional development official now ranks YouTube content creation among the town’s biggest businesses, alongside pharmaceutical manufacturing.”
“Merchant of Death: The Case of Kenneth Law and the Shadowy Online Network That Helps People End Their Lives,” by Luc Rinaldi for Toronto Life. Police have linked Kenneth Law to at least 120 deaths in countries around the world — the result of a profitable online business he started in 2020, selling a known poison to suicidal people. Since getting caught, Law, 57, has described himself as a humanist who only wanted to help. The truth is both less flattering and far more grim: “I need a source of income,” he told one interviewer. “I hope you can understand that.”
“Barack Obama on AI, Free Speech, and the Future of the Internet,” by Nilay Patel for The Verge. I don’t usually share podcasts — or transcripts of podcasts, for that matter — but then I found myself reading this one in full. Possibly I’m just nostalgic for a different political era! But I found Obama’s explorations of democracy, AI and internet regulation uniquely articulate and accessible.
“How a Tiny Pacific Island Became the Global Capital of Cybercrime,” by Jacob Jidah for MIT Technology Review. Small island nations around the world have cashed in on domain extensions, marketing domains like .ai or .tv to wealthy foreign businesses. But Tokelau — population: 1,400; domain: .tk — barely profited from the 25 million customers with .tk websites, thanks to a “digital colonizer” named Joosh Zuurbier.
👉 ICYMI: The most-clicked link from last week’s newsletter was this piece on the SEO experts who “ruined” Google.
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Postscripts
Creator camps. Erosion bird. #RushTok fashion. The pig that converted a thousand carnivores and the woman who rotated 50-odd sandwiches. The rare Japanese KitKat heist. The rise of big-dollar refund fraud. This past week, in underwhelming: drone delivery, AI smoothies, tiny/tricky products and the Beatles’ “final” song.
Online dating, but for adoption. (Unsurprising spoiler: It didn’t work.) Gannett hires Swiftie. Microsoft mucks up news. CAPTCHAs really are getting worse. Deepfaked nudes have tripled in the past five years. The social web has entered its “post-viral” period. Last, and probably least: “The self-facing camera has finally turned the male gaze on itself.”
That’s it for this week! Until the next one. Warmest virtual regards.
— Caitlin