Infertility is hard to talk about. How the internet makes it harder — and easier

Mother’s Day is coming up. For a lot of people, it’s an opportunity to post adorable family photos on social media and celebrate a day dedicated to moms.

For millions of women, it’s a painful reminder of what they don’t have.

In the United States, one in eight couples will be diagnosed with infertility. It’s a jarring diagnosis that’s accompanied by a rush of emotions and worries. In America, sex ed consists mostly of warnings about how deceptively easy it is to fall pregnant — one wrong move and, boom, you’re wearing a maternity dress to prom. The idea that getting pregnant isn’t necessarily easy or instantaneous can be confusing and upsetting. The prospect of medical intervention — from invasive tests to hormone-altering drugs to surgeries — can be frightening. And that’s before you figure out how you’re going to pay for it.

Social media and the internet can make an infertility diagnosis better and worse. When you’re struggling to start a family, it can feel like your newsfeed is an onslaught of aggressive pregnancy announcements, newborn photo shoots, major childhood milestones and kids’ birthday parties. Opening up Facebook or Instagram can feel like a relentless celebration of everyone else’s fertility. But at the same time, people experiencing infertility have access to a wealth of support groups and information online that weren’t available a generation ago.

Infertility is still a major taboo, even in an age when people are more open about other types of medical issues on social media. It’s at the intersection of a lot of things that are all taboo on their own: sex, money, religious beliefs, family planning, medical decisions. But social media gives people the ability to connect to other people who know exactly what they’re going through.

On Facebook, thousands of people have joined groups where people can discuss infertility diagnoses and treatments. On Reddit, there are multiple forums, known as subreddits, dedicated to various aspects of trying to conceive and seeking medical help to do so. On Instagram, people run anonymous accounts where they connect to others using hashtags like #ttc (“trying to conceive”). Some people opt to “lurk,” or observe conversations and posts on social media sites without participating themselves.

Not everyone feels comfortable talking to their family and friends, but social media can provide a place where people can candidly discuss their experiences and ask questions while preserving some semblance of privacy from the outside world.

Social media also provides an outlet for people to publicly share what they’ve been going through: Like pregnancy announcements, “infertility announcements” have cropped up, and Pinterest is chock-full of ideas for birth announcements that acknowledge medical intervention was involved.

Michelle Obama, Chrissy Teigen, Kim Kardashian and Gabrielle Union have all opened up in recent years about their struggles with infertility. Just this week, “Today” meteorologist Dylan Dreyer revealed she’d experienced a miscarriage while struggling to conceive her second child.

On Netflix, movies like “Private Life” and documentaries like “One More Shot” show what it’s like to go through a devastating diagnosis. Infertility memoirs like Belle Boggs’ “The Art of Waiting,” Peggy Orenstein’s “Waiting for Daisy” and two more books published in 2018 have turned infertility memoirs into a literary subgenre.

Elyse Ash is the founder of Fruitful Fertility, a free online program that sets up people going through infertility with “mentors” who’ve been through the process to answer questions and provide support. Mentors and mentees are initially connected via email to protect their privacy but can stay in touch however they want, including through social media. When Ash and her husband were having difficulty getting pregnant, she said even some of her closest friends weren’t supportive in the way she needed them to be.

“It’s a really lonely and isolating time,” Ash said. “I was just really surprised by my personal network’s inability to really empathize with what I was going through. They’ve been through so much with me, breakups, moves, all of this really tough stuff, but somehow with infertility they just could not understand why it was so hard for me.”

She said people’s reactions ranged from dismissive to misunderstanding to downright condescending.

“They couldn’t sit and commiserate with my depression and anxiety,” Ash said. “It was, like, ‘Oh, just relax,’ ‘Maybe you’ll get pregnant on vacation,’ ‘Haha, you can have mine!’ They didn’t understand the magnitude of what I was going through.”

She and a group of friends she met at fertility-specific class at her yoga studio formed a Facebook group to talk about going through infertility treatments. But as time went on, predictably, some of the women in the group got pregnant while some didn’t. Some went through identical treatments at the same time, but it would work for one person and not the other. Some people had a child and then got pregnant a second time, while Ash was still struggling for her first.

Forming the group “was a great idea and a great experiment, but almost made it harder in some ways,” she said.

Ash’s background is in branding and marketing and her husband is a web developer, so they worked together and launched the Fruitful Fertility platform during National Infertility Awareness Week in 2017. (National Infertility Awareness Week 2019 runs April 21-29, timed to come just before the holiday celebrating moms.) Today, more than 3,100 people have signed up.

For a lot of people, the first shock of infertility is realizing it isn’t as easy to get pregnant as sex ed would have you believe.

“We thought you just up the sex count” to get pregnant quickly, said Anna Almendrala, who lives in Los Angeles. She said it didn’t take long for her to realize that she didn’t know as much as she thought about the physical process of getting pregnant.

“After a couple months, I started doing reading. I was, like, Wait a second, this has been so misguided. Fun, but misguided.”

Ultimately, Almendrala and her husband were diagnosed with infertility and used in vitro fertilization to conceive their daughter. Like any medical event, there are highs and lows and inadvertently hilarious moments that only make sense to other people going through it. Almendrala said she found the whole process at times “tragic and depressing and upsetting,” but that also, “a lot of parts of the infertility treatment process were really funny.”

It was something that was hard for people outside the infertility world to understand, but she knew it would resonate for other people who were in the weeds of egg retrievals and embryo reports and daily transvaginal ultrasounds. Almendrala, who’s now a freelance healthcare reporter, and her husband, TV writer Simon Ganz, created and hosted two seasons of a podcast called “IVFML” that documented their infertility journey. They used social media to help announce the podcast when it launched and to reach followers when there were new episodes.

Infertility can be an all-consuming physical and emotional roller coaster, said Megan Edwards Collins, an associate professor in the occupational therapy department at Winston-Salem State University in North Carolina, who recently published a study in the Journal of Reproduction & Infertility on the physical and psychological tolls of an infertility diagnosis.

In evaluating interviews with study participants, Collins said she was struck by how women talked about the struggle for day-to-day self-preservation when dealing with infertility. It affected every aspect of their lives, from their romantic partnerships to their jobs to their finances to the ability to take time for self-care. It was also intensely isolating. For many, seeing baby-related posts and advertising on social media was a trigger for negative feelings.

“Infertility is very lonely,” she said. “You feel responsible, you blame yourself like you’ve done something wrong.”

Women interviewed for the study told Collins they felt they had to keep infertility a secret to avoid being misunderstood — having people question the diagnosis or their medical decisions, or getting the dreaded and deeply unhelpful advice to “Just relax!” or “Just adopt!”

For many people, finances are the top concern. In vitro fertilization is covered in only a handful of states, and California isn’t one of them. But that could change: A proposal was introduced to the state Legislature this year that would mandate health insurers to cover IVF.

With no insurance coverage, IVF can cost $15,000 to $25,000 or more per cycle. And there’s no guarantee things will work out in just one cycle — the average woman will go through two or more before becoming pregnant and getting a so-called “take-home baby.” For some couples, the price tag permanently closes the door to treatment, said Barbara Collura, the president and chief executive of Resolve: The National Infertility Organization. Resolve has a national helpline, and the No. 1 question they get there is: How am I going to pay for this?” said Rebecca Flick, Resolve’s vice president for communications and programs.

Thanks to Michelle Obama and other celebs, infertility is no longer a dirty word »

Social media is another place people look for support. On infertility Reddit forums and Facebook groups, people ask about experiences going abroad for IVF, paying with personal loans or zero-interest credit cards, and whether anyone has gotten grants through organizations like BabyQuest. Couples use crowdfunding sites like GoFundMe to ask their family and friends to pitch in and help offset the cost. On Facebook, there’s a group specifically for people who take a part-time job at Starbucks to take advantage of a $20,000 infertility benefit offered to all employees.

As more people open up about what they’ve been through, we may see a day when everyone is capable of empathizing when someone says she or he is having trouble making a family. Until then, there’s social media.