21.1 C
New York
Sunday, April 14, 2024

Who Are Instagram's Infertility Influencers Really Helping?

In the minutes and hours after learning about my first miscarriage during a routine ultrasound, my senses sharpened to the physical details around me: the blossoming warmth of May in Maine, a single feathery cirrus cloud overhead in an otherwise perfectly blue sky, the MOJO RZN license plate on the maroon Mustang in front of us at a light as my husband and I drove home disappointed. Early pregnancy can be speculative, those initial days filled with prospect and sparkly suspense. It’s a dreamy, hopeful time. My loss was immediately grounding. So many of my days had been spent in the ether, in a wishful bubble of making lists and scrolling Instagram—a bubble that popped when there so clearly wasn’t a heartbeat on the screen in the cool, dark imaging room. Now as we drove back to our house and our toddler, the concrete details of the ride were asteroidal. The smell of burning brakes, the tick-tock of a turn signal, the sign at Taco Bell lit up with the promise of health insurance and paid vacation, gravel beneath a tire, and a nagging, invasive voice in my head asking me the question: Will you put this on social media?

I didn’t, but boy did I scroll. Through the accounts with letter boards with careful messages about loss. Through posts with sepia-toned rainbows and empty cribs. Through Candles. Wishes. Prayers. The thing was, I was kind of OK: I knew the miscarriage was the biological process of nonviable pregnancy. But the loss of the potential—that thrill of anticipation—was a gulf of sadness I just didn’t see coming. Miscarriage is like homesickness for a person you will never meet.

In the minutes and hours after my second miscarriage, I thought: You’ve got to be fucking kidding me. I had been assured that, statistically, there was an 80 percent chance I would go on to have a normal pregnancy. But following my dilation and curettage, I received unexpected results: this time, I had experienced a partial molar pregnancy—a medical anomaly that affects only 1 in 1,000 pregnancies—and I would have to go through months of close monitoring to ensure no tissue was left in my womb, because it can turn cancerous and spread to your lungs in a matter of weeks.

I went back to Instagram and resumed my scrolling. There were the same old #TTC (trying to conceive) hashtags and babyless onesies, the color-coordinated grid posts with phrases like “you are not alone” and “1 in 4.” There were pictures of people holding their rainbow babies in shots staged under blooming cherry trees.

Meanwhile, I began eating ham sandwiches in bed and sitting out my parenting duties. One day I realized it had been a solid seven days since I had even set foot outside; I tried to leave my bedroom but couldn’t. Text messages on my phone went unanswered but not because I wasn’t on it, my thumb still mechanically flicking away at posts. The losses chronicled on prominent infertility accounts were dainty and composed; the rooms that had no babies still had nice light awash in the Sierra filter; the women who posted selfies looked, well, bathed. Like everything else on Instagram, even grieving had become aspirational—beautiful but empty. And I had come undone.

There is a debate over whether miscarriage, particularly in early pregnancy, is death. Socially, we can’t even agree on what miscarriage is. State by state, women receive different treatment, and our work environments rarely acknowledge it. Miscarriage “is a type of loss that our culture just doesn't really know what to do with,” says Crystal Clancy, a Minnesota-based marriage and family therapist and perinatal mental health specialist. “Because it can happen at different stages of pregnancy, because it has different meanings to everybody, because people may not be comfortable with it—it is just something that most people don't want to talk about.” This affects people both financially and emotionally. Most people do not receive paid leave for pregnancy loss, which can force individuals who have to have D&Cs, a surgical outpatient procedure, to have their phone nearby and on vibrate in case work crops up. Additionally, most insurance companies provide spotty coverage for miscarriages. I’m still paying off both my D&Cs, which weren’t covered by my insurance and ended up costing me more than my C-section and five-day hospital stay after the birth of my daughter. There is just no social safety net for miscarriage, which also becomes apparent online.

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

As for the silence Clancy mentioned: It’s oceanic. “There is a strident trifecta swirling around the topic of miscarriage—made up of silence, stigma, and shame,” says Jessica Zucker, a psychologist specializing in reproductive health and the author of I Had a Miscarriage: a Memoir, a Movement. “Each aspect of this trifecta stokes the next. The cultural silence provokes the blanketed stigma. The stigma ignites the insidious and all too pervasive shame … In turn, grievers are often met with stilted, awkward platitudes, whispered saccharine-coated sentiments, or worse, complete and utter silence.” In other words, oftentimes people have no idea what to say, so they say something subpar or don’t say anything at all.

This inscrutability and grief pose distinct features that make pregnancy loss difficult to overcome. In her book Ambiguous Loss, family therapist Pauline Boss argues that losses that don’t have conclusions, like a family member missing in action or a loved one afflicted with dementia, are particularly hard to overcome. The book, written in the 1990s, has become a popular read for people struggling with climate grief, but it also applies to miscarriage.

As humans, we just need closure. Without it, we are adrift. Boss writes, “The greater the ambiguity surrounding one’s loss, the more difficult it is to master it and the greater one’s depression, anxiety, and family conflict.” Without validation from our health care system, our places of work, and our friends and family who struggle to know the right thing to say, of course one of the most natural places to turn would be the internet.

Most pregnancy-loss accounts are started with good intentions. Clancy believes a lot of people who start accounts to share their infertility journeys don’t really know what they’re doing at first; they’re just trying to feel better. But as accounts gain in influence, they become subject to the same pressures as those selling bespoke dinnerware or weight-loss packages. The result is borderline glamorous aesthetics and aspirational grieving.

The image of a mother’s hand, a little bracelet with a name spelled out in black and white beads in her palm, a woman posing in a magnificent rainbow skirt that spills over her surroundings like a waterfall, a book of Rupi Kaur poems cracked open with a fallen flower on one of the pages—all these posts of things I would never do myself made me wonder if I was doing it all wrong in general. Should I have saved those early ultrasound pictures? Or made special jewelry? Perhaps. But what bothered me more was how aesthetically pleasing these accounts make miscarriage. Aspirational grieving sends the message that we have to make pregnancy loss pretty in order to make it acceptable.

These same cultivated accounts create confusion over who or what is posting. Whether or not an Instagram account is being monetized, ones that seek to gain followers end up creating the same standardized content you’d see on the account of an actual influencer being paid to post #ads. Encountering a platitude on the grid that could’ve been posted by a company or a person who's going through the same thing as you is jarring either way. If it’s coming from a company, it’s worrisome that your grief is a data point to be gathered for exploitation. If it’s coming from a sincere place, since it still seems like advertising, it ends up being that scanty response that both Clancy and Zucker say makes the grief even more isolating and that people should seek to avoid.

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

This is also a function of the limitations of an Instagram post. No post could ever begin to encompass the vastness of pregnancy loss, particularly because it comes in so many iterations: chemical pregnancy, blighted ovum, missed miscarriage, complete and partial molar pregnancies—the list goes on. And even attempts that do try to include individual experiences often feel geared toward the masses. Grid posts that collect all the different types of pregnancy loss in an appealing graphic with icons representing variable experiences are like posters you ignore in waiting rooms.

Most pregnancy-loss accounts have another glaring omission: the partners of people who were pregnant, and queer families. Pregnancy loss doesn’t happen in a vacuum, and partners often go undiagnosed with PTSD, depression, and anxiety after a pregnancy loss, but you wouldn’t know that by consulting Instagram. You wouldn’t know that queer families often sink their fortunes into expensive procedures like intrauterine insemination and in vitro fertilization that have no guarantee of taking. That people experiencing miscarriage are diverse and are not remotely represented by the largely white and largely female contingent grieving their losses online.

Of course, social media has been good for pregnancy loss in some ways. In a follow-up email, Clancy mentioned she has had clients share several ideas with her about ways they honor their loss using social media, such as encouraging random acts of kindness and fundraising.

But for those of us who aren’t project-oriented or are still trapped in bed with sandwich crumbs, what is there for us?

In a follow-up after my second miscarriage and second D&C, I mostly used the appointment to ask my doctor over and over again if this was normal. Was I normal? My doctor, whose expression was impossible to read because of her mask, told me, unconvincingly, it was. Then she suggested I join a support group.

I was immediately hostile to the idea, my impression of support groups contaminated by cinematic depictions of desperate people gathering to swap new-agey ideas to aid in self-improvement. But support groups have proven to be effective in several settings, largely because they do involve an exchange of ideas but also perceptual and cognitive resources like love and status—a sort of emotional mutual aid—that largely can’t be found in a static Instagram post.

It’s just as easy to scroll past the post of a big, curated pregnancy-loss account as it is to ignore Ikea ad content, because nothing generalized makes you stop in your tracks. Nothing generalized is validating. But communion and active participation is. And communion is exactly what gets lost in the passive flood of posts you encounter when you open the app.

I was in search of the in-between. Not an instagram account and not an in-person support group but some small and intimate liminal society of exchange where a back-and-forth replaced the feeling of being influenced. I needed to find people who were going through exactly what I was: blood draws every other day, then every week, in perpetuity, the uncertainty of whether this fluke miscarriage would turn into cancer, the elimination of trying to conceive from the near future or perhaps at all. I had been in denial about the notion that my second miscarriage had thrown me into an unfortunate club that very few people were in. Now I needed to officially join it.

Most PopularBusinessThe End of Airbnb in New York

Amanda Hoover

BusinessThis Is the True Scale of New York’s Airbnb Apocalypse

Amanda Hoover

CultureStarfield Will Be the Meme Game for Decades to Come

Will Bedingfield

GearThe 15 Best Electric Bikes for Every Kind of Ride

Adrienne So

In the end, it was a hashtag that saved me. In the waiting room at my doctor’s office during one of my countless visits, sitting on the teal leatherette chairs, I decided to change my approach. I stopped scrolling accounts and searched hashtags instead. #PartialMolarPregnany flung me into the far reaches of Instagram where other people with rare cases like mine were also rudderless and searching. The hashtag helped me drill down to the precise community I was looking for. I’ve never felt quite comfortable engaging with strangers online, but seeking answers that our health care system failed to provide made me more assertive.

There were only about a thousand of us, and we talked about HCG levels and the fact that our condition was so rare there isn’t even an agreed protocol for how to treat it clinic by clinic. There were letter boards and the occasional rainbow, but there weren’t prayers or nurseries. Just the exchange of stats and empathy, that emotional mutual aid I realized I had been seeking unsuccessfully by randomly scrolling. I had found a little group of people who thought pregnancy loss was as ugly and uninspiring as I did, and finally that was enough.


More Great WIRED Stories📩 The latest on tech, science, and more: Get our newsletters!This startup wants to watch your brainThe artful, subdued translations of modern popNetflix doesn't need a password-sharing crackdownHow to revamp your workflow with block schedulingThe end of astronauts—and the rise of robots👁️ Explore AI like never before with our new database✨ Optimize your home life with our Gear team’s best picks, from robot vacuums to affordable mattresses to smart speakers

Related Articles

Latest Articles