The Shame, Silence, and Stigma of Infertility and Miscarriage

1
6 Reasons We Don't Talk About Infertility and Miscarriage

Woman holding her finger to her mouth sushing, silence on infertilty and miscarriage
The silence surrounding infertility and miscarriage comes both from within and from without. Anakin Tseng / Getty Images

Despite many efforts to break the silence on infertility and pregnancy loss, fertility and miscarriage remain taboo subjects.

Those suffering don’t share their experiences with others. Non-members of the infertility-and-loss club don’t know how to react or what to do when they are told of a friend’s struggle. Some honestly are uncomfortable hearing about it at all.

The stigma is strong.

Why?

With 1 in 8 couples experiencing infertility – and up to 25% of pregnancies ending in miscarriage – why as a society are we so uncomfortable discussing these relatively common life events?

2
Feelings of Brokenness and Shame

Couple undressed with only underwear on trapped in black box, metaphor for shame of infertility and miscarriage
Infertility and miscarriage can cause you to feel broken, ashamed, and alone. Know this: you are not broken, you are not alone, and you have nothing to be ashamed of. Henrik Sorensen / Getty Images

When a man or woman finds out that they are infertile, shame is a common and normal reaction. Infertile people will often share that they feel broken or defective.

Women and some men who experience pregnancy loss – especially repeated losses – have similar reactions. Why can’t my body hold onto a baby? What is wrong with my sperm or genetics that it can’t help create a sustained life? 

On top of this, people may wonder if they did something to cause the loss.

Most causes of infertility and miscarriage are not under the direct control of a couple. However, even when a person knows this, the nagging feeling that this is all my fault pulls at them.

Interestingly, you don’t see this as frequently with other medical issues.

How many people with type 1 diabetes, asthma, or celiac disease blame themselves, or are ashamed to admit they have their disease?

What’s the difference?

Bottom line, from a purely logical standpoint, there is no difference.

Infertility and pregnancy loss are medical issues. Not character faults.

Infertility and miscarriage make you no less human, no less woman, and no less man.

3
Infertility and Miscarriage Deal With the Body Parts "Down There"

Twitter screenshot of Tweet discouraging euphemisms for vagina, a possible source of shame
In a world where authoritative medical sources are afraid to use words like vagina or penis, how can we expect to discuss closely associated topics like infertility and pregnancy loss?. @RobinPregnancy / Twitter.com

Fertility, miscarriage, and pregnancy are directly connected to sex and the reproductive organs. Assuming you’re not using fertility treatments, if you want to get pregnant, you have to have sex.

Ever since the story of Adam and Eve, the genitals and reproduction have been associated with shame. Topics that involve the genital and reproductive area of the body are just as taboo.

(Note that infertility and pregnancy loss are rarely associated with a problem with the genitals themselves or difficulties with sexual intercourse itself. However, the association is there in people’s minds, and that’s enough to make them uncomfortable with the topic.) 

Case in point, take this social media example: @womenshealth is the Twitter feed for the Office on Women’s Health, which is a part of the U.S. Department of Health and Human Services.

On August 11, 2015, they posted a Tweet that started off with “Wondering what’s the best way to clean… down there?

This is a government run women’s health Twitter feed... but they did not feel comfortable using proper terminology.

Thanks to the power of social media, a number of Twitter users protested the phrasing, including pregnancy expert Robin Elise Weiss (‏@RobinPregnancy).

In response, @womenshealth posted that they will in the future use proper terminology.  The follow-up tweet: "We agree #VaginaIsNotaDirtyWord & we will be sure to use it in the future."

If medical professionals are uncomfortable with words like vagina and penis, how can we expect to talk about fertility and miscarriage, issues so closely related?

4
People Don’t Know What to Say – And They Say the Wrong Things Often

Paper bag over someone's head with questions marks, metaphor for not knowing what to say re: infertility
Talking about infertility and miscarriage makes some people uncomfortable. Not knowing what to say, they often accidentally say all the wrong things. muharrem öner / Getty Images

Want to make someone uncomfortable? Tell them that you’ve just experienced a pregnancy loss. Or that you’re dealing with infertility.

While those that already have personal experience will likely react appropriately (maybe – not always), most will squirm.

Many people – good and compassionate people – are uncomfortable with tough topics like infertility and miscarriage. They just don’t know what to say.

Infertility isn’t the only situation where people say the wrong things. Death, divorce, and many other medical issues get their fair share of insensitive comments.

Unfortunately, because of their discomfort, they also tend to say the wrong things. 

Why don’t you just try IVF? At least it’s not cancer. Why don’t you just adopt?

Oh, you were just a few weeks pregnant? That’s not a big deal, miscarriage happens all the time. You should get over it. It was only a bunch of cells, not a real baby.

Blaming comments are also common.

You shouldn’t have waited so long to have kids. You should change your diet; then you’d get pregnant.

Here's what often happens:

The infertile person reveals their struggle. They are met by well intended but unfortunate comments that make them feel worse. And, as a result, they are less likely to share their struggle with someone else.

It’s a vicious cycle and a major contributor to silence. 

5
The Struggles of Parenthood Can Make Infertility Empathy Difficult

Woman holding a sleeping baby, exhausted from stress of parenthood
Parenting a newborn baby isn't easy. The adjustment is difficult for many men and women. Tara Moore / Getty Images

You know what else is taboo? Talking about the struggles of pregnancy, childbirth, and parenthood.

Mix the pain of infertility with the struggles of parenthood, and you are bound to get inappropriate reactions.

A study in Germany of 20,000 participants assessed how content people were with life before and after major life events. The researchers were careful to not directly ask how the life event affected their happiness levels.

In other words, they didn’t ask, “Are you happier or less happy after the birth of your child?” because people would lie. Very few people would say they were less happy as a result of the birth of a child.

Researchers found that parental ratings of well-being and happiness significantly dropped within the first year of the birth of a child.

In fact, on average, the drop in well-being was steeper after the birth of a child than it was after the death of a partner, divorce, or unemployment.

Putting parenting struggles into perspective, over the long run, researchers also found that having up to two children raised people’s overall sense of well-being. The big drop tends to occur within that first year of adjustment.

Now, let’s consider those with infertility.

A person with infertility – who is in deep emotional pain – shares their struggle with a friend who has had a baby recently or even has older children but remembers those difficult early days.

The very stressed and tired parent says (without thinking) something like, You can take my kids! You have no idea how lucky you are.

This is painful for the infertile person because they interpret it as the other person not appreciating the blessing they have. It’s also a way of dismissing the infertile person’s emotional pain. It implies their infertility isn’t as bad as they think it is.

Meanwhile, the parent says this (inappropriate) statement because parenting is extremely hard, but they can’t talk about that reality with people directly. So it slips out in awkward moments like this one.

These reactions lead to more silence.  

6
Early Pregnancy Secrets Lead to Secret Pregnancy Loss

Sad couple with doctor getting news of early miscarriage
Early pregnancy secrets lead to early miscarriage silence. kupicoo / Getty Images

One of the biggest reasons people don’t talk about early miscarriage is because no one talks about early pregnancy. You’re not “supposed” to tell people.

There seems to be an unwritten rule that you can’t tell people you’re pregnant until at least the second semester.

Dare to share, and you’re likely to received admonishments and judgments:

  • Oh, it’s bad luck to tell people! Don’t tell anyone.
  • TMI. Too much information. Don’t tell people you’re pregnant until everyone can see you’re pregnant just by looking.
  • Dear, if you tell people, and you lose the pregnancy, you’ll have to tell everyone about the loss.

If you don’t want to share the news of your early pregnancy, that is perfectly acceptable. People should respect that decision.

With that said, if you want to share, you should not be shamed and scared into silence.

Last I checked, sharing your early pregnancy news does not raise your risk of experiencing a miscarriage.

And why should sharing an early pregnancy be considered more TMI than sharing the news about a later pregnancy? (I wonder if people would consider it TMI if later pregnancy wasn’t so visible to outsiders. A frightening thought...)

As for the risk of losing the baby, and needing to tell people you lost the baby after, what is so wrong about that?

Yes, it will be painful. But at least you won’t be mourning the loss alone. Your loss will not be invisible. That is way better than suffering silently.

You do not need to suffer silently.

7
Misconceptions on Infertility and Miscarriage

Two women behind a blurry glass represents unclear understanding of infertility
Myths surrounding infertility and miscarriage make it more difficult for people to be heard and understood. Cultura RM/Frank and Helena / Getty Images

There’s a lot of misinformation out there that also contributes to silence and shame.

The misinformation exists on both sides, too – those suffering silently and those who may hear our stories.

Some myths that lead to both silence and lack of support include:

  • Infertility and miscarriage are the fault of the woman. Something she is doing is causing these problems.
  • Infertility is only a problem for “career” women who wait “too long” to have children.
  • Infertility is a woman’s problem.
  • Fertility is only a problem for heterosexual couples.
  • Birth control causes infertility and miscarriage.
  • Fertile people are more lovable. Infertile people are worth less.
  • Miscarriage is a punishment from God.
  • Infertility is a punishment from God.
  • A man who can’t impregnate his wife is weak and less masculine.
  • A woman who can’t get pregnant or hold onto a pregnancy is less feminine.
  • Infertility is caused by not knowing how to have sex.
  • Grief over an early miscarriage is not normal. You should “just get over it.”
  • Infertility is a “lifestyle” problem – not a disease.
  • No one wants to hear your infertility or miscarriage story.

Just so we’re all clear – none of the above are true.

8
Go Out There and Break the Silence

friends in a cafe having a sensitive conversation on infertility and pregnancy loss
When you're ready, share your story. Your experiences are the most powerful weapon against the shame and silence of infertility. Dave and Les Jacobs / Getty Images

Shame and silence can only survive in dark corners. It’s like mold. It thrives when hidden from the light.

It’s time we break the silence on infertility and miscarriage. It’s time we stop feeling ashamed of medical problems over which we have little control.

Start talking about infertility and miscarriage. Share your experiences.

Share them even if your infertility and pregnancy losses occurred years ago. In fact, especially share them then – you are in a stronger place to tell your story than those in the thick of it.

If people react badly when you share (and some will), gently explain to them why what they said is hurtful or untrue. Tell them what they can say. Help them.

Sharing your personal story will help everyone suffering from infertility or miscarriage.

Telling our stories is our most powerful weapon we have against the shame and stigma of infertility and miscarriage.

More on talking about infertility:

Sources:

Margolis R1, Myrskylä M. “Parental Well-being Surrounding First Birth as a Determinant of Further Parity Progression.” Demography. 2015 Aug;52(4):1147-66. doi: 10.1007/s13524-015-0413-2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4531135/

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