Published in: JOURNAL, pregnancy

My doctors failed me when I miscarried. I turned to friends to guide me through.

By Mia Clarke

(Originally published in the Washington Post on February, 3rd, 2022)

Nyssa co-founder Mia shares the story of her recent miscarriage. She urges women not to remain silent about the painful, sad, and uncomfortable realities of our experiences -- speaking up and speaking out are first steps along the way to better outcomes for us all.

 


One day I was 12 weeks pregnant, standing in the center of a frozen lake in Lapland, Finland, with my partner, admiring the fir trees laden with snow and the expanse of white before us. The next evening, he buried our tissue-wrapped son by the bank of that same lake in the darkness while I lay in a bloody puddle, hotel towels shoved between my thighs.

In a haze, I dismantled my dream of a second chance at motherhood while trying to stay attuned to the rush of blood that followed the oddly dreamlike moment just a few moments before, when I had caught the fetus leaving my body and counted every rib, finger, toe. I howled, crouched in a corner of the bathroom, an animal caught in electric grief.

They say it takes a village to raise a baby. But what about when that baby is lost? Who is there for us?

In my case, it wasn’t the people I trusted to look after me. My midwife told me to call and message her at any time; she didn’t reply until three days after I miscarried.

I rushed to the central hospital in Lapland when I started spotting. The on-call osteopath leading the ultrasound said she had no idea what she was doing. When she couldn’t find a heartbeat, I begged her to find a trained sonographer. I was told there wasn’t a heartbeat; then, suddenly, there was.

They instructed me to go back to the hotel, to wait and see. That was it. I asked what I should do if a miscarriage were to occur and whether I would likely see the fetus. They’d told me to stay close to a bathroom — and no, absolutely not. I would see clumps of tissue and “stuff,” they promised. Nothing more.

With no idea what to expect and little information from my medical providers, I turned to a friend who had recently endured two miscarriages at similar stages of pregnancy. Texting from a cab on the edge of the Arctic Circle on my final day of vacation, I asked her: What should I do? Her reply was exactly what I needed: practical, step-by-step advice to safely prepare me for the worst moment of my life.

That was a month ago. Since then, I’ve been given a stream of conflicting, confusing and unsatisfactory information from doctors about my health and recovery. I’ve had to constantly speak up for myself, requesting scans to monitor the “retained product” left inside me and demand pain medication and infection monitoring that was never proactively offered.

My experience proves what I already knew simply by being a woman in the world: Protocol is frequently assigned a higher value than individual circumstance, and you absolutely must be your own advocate (and if you are not in the physical or emotional state to request what you need, someone you trust needs to do it for you). This is hardly ideal when you are under great strain. But until miscarriage research and care improves, it is necessary.

In contrast to the excruciatingly silent, lonely years I spent trying to conceive my daughter with my ex-husband, navigating many rounds of fertility treatment without much emotional support, I decided to be open with my friends and family about my miscarriage. Many more than I knew had endured loss themselves.

This isn’t surprising; about 10 to 20 percent of known pregnancies end in miscarriage, but that number’s likely higher because so many occur very early in pregnancy.

What is surprising is still how little we talk about these experiences.

Women work and mother and create and learn and achieve amid an epidemic of silence around our miscarriages, our periods, our stillbirths, our pelvic pains, our postpartum recoveries and matrescence, our vulvas, our fertility struggles, our abortions, our breasts, our choice to be child-free, our perimenopause and menopause.

From puberty onward, we experience an unrelenting series of profound physical and hormonal transformations.Yet still we keep those transformations closely guarded, tight to our chests. Hushed. Unmentionable because they remain unmentioned.

This doesn’t do just womankind an injustice. How can the men in our lives support us appropriately when they, too, have so little information about the extreme physical and emotional dimensions we experience? I am in awe of the strength of women and everything that we accomplish — in endless awe of all of it. Except our silence.

There are many incredible medical professionals out there. But the ones I saw failed me when I needed them most. Instead, I turned to friendship and, alongside the solid support of my boyfriend, received actionable advice about my physical recovery as well as space to give voice to unspeakable grief.

I am not alone. The infertility and pregnancy loss community on social media essentially plays the role of doctor, therapist, advocate and ally to hundreds of thousands of women. These small networks of strangers send one another meal cards on hard days, locate leftover medications, share empirical evidence and peer-reviewed studies. They rally together to cover the cost of another woman’s fertility treatment, if needed.

My friend Emily, who has experienced multiple miscarriages in her effort to become a mother, is currently waiting on a package from a friend containing mifepristone to help her complete her most recent loss. Known as the “abortion pill,” it was denied to her due to regulations in her home state of North Carolina.

She told me she joined the infertility community on Instagram because she was “seeking to gain the knowledge I so desperately needed but wasn’t given access to by medical providers.” Relying on this resource at “any given second” is the only way she’s advocated for herself through six losses, she said: “We have been forced to educate ourselves.”

All too often we hold our experiences close because we think no one will understand, or because we are ashamed, or because we fear being perceived as weak. Yet as women, we are born with an extraordinary capacity for transformation built in. It’s in our bones. Our breasts. Our bellies. Our births. The ability to transform pain and disquiet into something powerful is the shared physical and emotional destiny of womankind.

But still we allow ourselves to disappear — quieted by medical, operational and political systems that do not prioritize our health and well-being. We must not cheat ourselves out of the support we need and deserve. We must not cheat others.

We do not need to keep our battles of loss and change a secret. Nor the profound upheaval and beauty and pain we experience simply by being a woman in this wild world. We must not. After centuries of being told to lower our voices, to not make a scene, to not command space, to not speak up, it’s time for that to change — for good.

Silence about our health has cost women our autonomy, our selfhood, our relationships, our bodies, our lives. We must speak. And while it is an essential driver of change, talking is just the first step. Yes, we can hold each other up through the pure power of stories shared. Of knowledge gained and experiences said aloud. But far more critically, we must listen. We must act. This means addressing data gaps, workplace policies and pervasive structural inequalities and inadequacies in medical care.

Let’s start with telling our stories. Let’s start with equipping ourselves with knowledge and actively advocating for ourselves. Because if there is one simple lesson born from the millions of misdiagnoses, deaths, botched surgeries, damaging protocols, ignored requests and disregarded pain, it is this: Our silence will not protect us.

artwork: louise bourgeois


Read on 
My Miscarriage Story (Told in Four Parts)
My Season(s) of Infertility

 

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