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I've been trying to have a baby for almost 3 years. Infertility TikTok has helped me realize I'm not alone.

Sep 28, 2022, 14:53 IST
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TikToker Sarah Johnson has chronicled her infertility struggles for the past several years.TikTok/@sarahrogersjohnson
  • Nicole Tabak and her husband have been trying to have a baby for the past three years.
  • In her grief and frustration, she turned to 'infertility TikTok' for answers and support.
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In May of 2020, the COVID-19 pandemic was going strong and my husband and I decided it was the perfect time to start trying to have a baby. Flash forward to November 2021 and we were experiencing our first pregnancy after an unexplained infertility diagnosis — a pregnancy that ended in miscarriage at the same time hospitals were yet again restricting visitors and unessential procedures.

We've spent almost three years trying to have a baby with nothing to show for it but thousands of dollars in medical bills, hundreds of pregnancy and ovulation tests, one medicated IUI (intrauterine insemination) procedure, and a whole lot of emotional trauma. Throughout our journey, we've endured three pregnancy losses — two chemical pregnancies (miscarriage within the first 5 weeks) and that aforementioned first-trimester miscarriage at 10 weeks.

We've both had a multitude of tests run – all coming back clean – leading to our fertility clinic's diagnosis of "unexplained infertility." Unexplained infertility is a diagnosis given when none of the traditional infertility diagnoses (such as PCOS, endometriosis, male factor infertility, or thyroid imbalances) are present. It's the doctors' way of saying, "there's obviously something wrong but we don't know what it is," which is never something you want to hear your doctor say.

Infertility and pregnancy loss are inherently isolating experiences. It should come as no surprise that our stress amidst an "unknown infertility" issue — against the backdrop of the pandemic — was through the roof.

I took my stress out by scrolling for hours on social media. The algorithm was quick to connect my searches for "ovulation tests" and "best foods for fertility" to Instagram and TikTok accounts of people going through the same struggles we were. My Explore and For You pages were consumed by women comparing their IVF protocols, dipping their early pregnancy tests to find any hint of a line, and dancing through questions about the next steps in their fertility journey. Suddenly, I didn't feel so alone.

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Turning grief into content

"I didn't post [our first video] to be anything or for it to reach anyone. I was almost kind of video journaling, and then all these comments flew in of people who had similar struggles or could resonate with it in some way," Sarah Johnson tells me.

Sarah and her husband Cody have been sharing their infertility journey (or trek, as she calls it) since December 2020. They've endured recurrent pregnancy loss, multiple fertility treatments, and a diminished ovarian reserve diagnosis while at the same time amassing an audience of nearly 200k across TikTok and Instagram.

She tells me a story I know all too well, "We started trying and said, 'This will happen when it's meant to be, and we're not going to be crazy about this. We're just going to live life.' Then we looked up and all of a sudden it had been a year and nothing had happened."

Fertility is an unknown waiting game. Every month brings the promise of hope that this month could be the one. It can feel like everything else during these cycles of hope and disappointment is just filling time. Sarah, like me and others enduring this frustrating diagnosis, found solace online in the in-between.

"I started listening to infertility and pregnancy loss podcasts where people share their stories," she said. "I found it incredibly validating because there weren't really a lot of people in my personal life that had gone through this."

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When oversharing turns into a career

The validation Sarah talks about is what leads many down the road of sharing their less-than-ideal paths to parenthood on the internet. One person's shared story can often fuel others to speak up as well.

With over 3 billion uses of the #infertility hashtag on TikTok, it's easy to see how common an infertility diagnosis is and how deeply people are energized to share their stories. One in 8 couples have trouble getting pregnant or sustaining a pregnancy. Most likely, someone you know has been affected by infertility or pregnancy loss.

While some TikTokers like Sarah create content purely to document their personal experiences with infertility, she maintains that she "doesn't see [herself] as a creator, just someone who makes stuff and puts it out into the universe" — others are turning it into a full-fledged career.

With over 600k followers across TikTok and Instagram, Caitlyn O'Neil is a full-time content creator and mom (she refers to her 6-year-old daughter as her and her husband's "miracle," a natural pregnancy that occurred after their initial infertility diagnosis) and documents her struggles through trying to conceive her second child.

Caitlyn admits, "I never in a million years expected that half a million people would care to know when I'm ovulating, but here we are and I make a living off of this."

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Through her bubbly personality, honest sharing, and, yes, fun dancing, Caitlyn amassed a community who have rallied around her latest IVF cycles and show up each day to watch her document her ovulation and pregnancy tests. Her success has led to hiring a manager to help secure brand deals. She elaborates, "We wouldn't be able to keep going had I not had this additional income. I'm able to pay for fertility treatments, manage those bills, and not have to stress about the financial toll infertility takes."

If and when she does get pregnant again, she said she'll continue to post, as many infertility creators do.

"Yes, I do plan on keeping them going if that time comes, sharing the ups and downs of pregnancy after loss/infertility, and even parenting is still a journey I plan on sharing," she said.

The cycle of stress

The financial toll of infertility Caitlyn references is no joke. In 2015, the American Society of Reproductive Medicine found that the average cost of one IVF cycle was $12,400. This figure doesn't account for genetic or chromosomal testing of embryos or other procedures often needed in certain unexplained infertility diagnoses like mine and Caitlyn's. Add the financial burden to the stressors plaguing infertile couples and patients.

Researchers have found that anxiety and depression levels of women dealing with infertility are equivalent to those dealing with cancer and other chronic medical conditions. Furthermore, we're stuck in this loop of anxiety and guilt, knowing research also states that stress has a negative effect on the ability to conceive.

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The stress of this lonely experience amidst the loneliness of quarantines and social distancing is a stress like no other. It digs deep at our insecurities. It makes us question everything. It erodes our trust in our bodies, our timing, and the idea of what our lives would be — what our lives should've been before we knew what we know now.

In the end, all any of us can do is keep trying.

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