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 percent of pregnancies ending in miscarriage – why as a society are we so uncomfortable discussing these relatively common life events? 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. 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? 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. Mix the pain of infertility with the struggles of parenthood, and you are bound to get inappropriate reactions. A 2016 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. The 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. 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. 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? (Would people 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. 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. The Bible contains many lines referring to “barren women.” There are stories of infertile women who are blessed by god to have a child. Other biblical references to infertility indicate barrenness as a heavenly punishment. For those who move in religious circles, they may be afraid that if they tell someone they can’t conceive, that the person will think god is punishing them for some sin. While most people won’t come straight out and say, “God must be punishing you,” it does happen, sadly. Or, some people may “prescribe” religious remedies to the fertility problem. Suggest that they pray more, or do a particular good deed, or contribute more money to the church. Even those who are not particularly religious may not share because they are aware these ideas exist. 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.
