What are We so Afraid of? The Taboo of Infertility

Why no one wants to talk about infertility — and what to do about that.

Image credit: Kristina Flour

Something interesting happened when I shared the story of my infertility journey a couple of weeks ago.

Several people reached out to share their personal experience with infertility. But, with the exception of one or two people, the majority of these stories and messages were relayed to me privately.

This phenomenon underscores something I experienced myself — how utterly taboo the topic of infertility can be. That’s why so many men and women with infertility suffer in silence.

And that needs to change.

Infertility is Not “Normal”

The problem is that infertility is something that not many people know about unless you’ve dealt with it directly.

That’s why it’s seen as being outside of societal norms.

In our culture, it is expected that you should have 2.3 children once you’ve reached a “certain age.” And if you don’t, you are seen as a leper, somehow sub-human for not doing your part to procreate.

The reality is that infertility is terribly common. In fact, one in eight couples (or 12 percent of women) in the U.S. have trouble getting pregnant. That means, there’s a really good chance that someone you know is struggling with infertility — even if you’re not aware of it.

And yet, despite how common infertility is in this country, it’s not something that many people discuss or know much about.

It’s this paradox that makes infertility so darn lonely.

Why is Infertility so Taboo?

But, I believe people struggling with infertility wouldn’t suffer in silence if the topic was better understood and if more people were willing to discuss it.

So, why is infertility so taboo? Here are my theories:

1. It’s an awkward and uncomfortable topic.

“Let me talk to you about my uterus and my husband’s testicles” — said no one ever. Though, I have to be honest, I was tempted to say that many, many times in my struggle with infertility.

The challenge with infertility is that we’re talking about body parts that make people feel uncomfortable.

We all know what’s involved with getting pregnant, but most people don’t like to discuss the intricate details of it. And unfortunately, infertility typically means talking about things like ovaries, egg reserves, fallopian tubes, uterine lining, testicles, sperm counts and semen.

It doesn’t make for a great conversation at the grocery store or parties. So, we just don’t talk about it at all.

2. There’s a lack of education and information.

Our entire childhoods seem to be spent learning about how NOT to get pregnant. We are taught about abstinence, birth control and condoms. We hear stories about teenagers who get pregnant after having sex one time — even with a condom.

With all the educational fear-mongering about getting pregnant, you grow up assuming that making a baby is really easy. And while that’s the case for many people, it never occurs to you that it might not go as planned until you encounter that reality or hear about someone else who has.

I’m not necessarily suggesting that middle schoolers need to learn about infertility, but I do think there needs to be more education about the topic.

3. Infertility is laced with shame.

Humans are biologically wired to procreate. Heck, even the Bible tells us to “go forth and multiply.” That’s why it’s so frustrating when something that is supposed to be so natural doesn’t work.

Infertility makes you feel “less than” or “other than” because your body has failed you. Or that you are suffering from some cruel, Darwinian joke.

That’s why infertility often comes wrapped in a package of shame.

Infertility tells you the lie that you are not good enough. That you are a failure. That you are not worthy of a baby. That there is something wrong with you as a human being.

For those that don’t have trouble having babies, it’s puzzling and difficult to understand why it was so difficult for someone else. Fertile people often incorrectly believe that maybe someone just isn’t trying hard enough. Or, maybe they are trying too hard and need to relax.

And that’s why many people with infertility don’t discuss it. They want to hide their shame and avoid judgement from people who think getting pregnant is easy for everyone. And it’s not.

4. People with infertility are protecting themselves.

Fertility treatment is a gut-wrenching, hormonally charged process. And when you’re in the middle of fertility treatment, your focus is on your own survival and success.

Most people with infertility don’t talk about it because they don’t want to broadcast when things don’t work out. For example, when we were going through our multiple IUIs, I told fewer and fewer people each time because it was so difficult to share when the treatment was unsuccessful. It’s like inflicting a tiny knife wound to your gut each time you admit failure.

Plus, being open about infertility means being faced with lots of questions and comments, which aren’t always sensitive or empathetic. And when you are in such a fragile state, educating people about infertility isn’t at the top of your list. You really just want empathy and support.

That’s why I’m sharing my story now — after I’ve been through a year filled with fertility treatments — instead of while I was in the middle of it.

5. People have strong opinions about fertility treatment.

People with infertility face many personal and difficult decisions — most of them dealing with how far you are willing to go in the process to become a parent.

Here are just some of the questions you may have to answer when faced with infertility:

Will you only focus on natural fertility remedies?
Would you be willing to have surgery to alleviate any potential issues?
Do you want to undergo fertility treatments?
How far would you go? Medicated timing? IUI? IVF?
Would you consider using donor eggs or sperm?
Would you use a surrogate?
Would you adopt?

Every person with infertility is different. And there are no right or wrong answers. But, everyone has an opinion about it.

The challenge is that you don’t really know what you would be willing to do until you are faced with those decisions yourself. For instance, I never thought I would go through IVF. I always believed that I would adopt before getting to that point. But, when faced with the diminishing window of having children biologically, we didn’t want to give up on that dream if IVF could get us there.

I think many times, people with infertility don’t want to talk about their chosen path for fear of being judged about their decision.

So What Can We Do To Change This?

I don’t have all the answers, but here are some ideas:

  • Increase education from the medical community. I think it would be helpful if adults weren’t just educated about how to prevent pregnancy and sexually transmitted diseases, but also informed about the possibility of infertility. What if OB/GYNs and primary care physicians educated patients about their risk of infertility?
  • Make fertility testing more accessible. It’s no secret that fertility treatments are rarely covered by insurance. But, did you know that even diagnostic testing for infertility is also not covered by many insurance programs? But, what if this wasn’t the case? What if fertility treatment was part of your regular annual doctor’s visit once you reached a certain age? Or, what if testing became more affordable? I’m already encouraged to see a new startup, called Modern Fertility, offering at-home fertility testing for $149. While this certainly doesn’t cover the gamut of all the testing you may need, this is a good start for many to become more informed about their fertility.
  • Stop judging and start listening. Perhaps the simplest thing we, as a society, can do is to stop judging people with infertility. Even celebrities face criticism when owning up to the fact that they went through fertility treatments. It’s easy to judge what you don’t understand. We should listen — really listen — to the stories of those who have struggled with infertility. And instead of judging them or offering advice on how to get pregnant, we should applaud them their bravery to step out and share.
  • Share more infertility stories. I think the best way for infertility to become less taboo is for more people to share their stories about it. As I mentioned above, this is terribly hard to do. But, when people are brave enough to share about their infertility journey, we should celebrate and applaud them instead of judging them, criticizing them or telling them what to do with their bodies. Stories help us learn, connect and understand. It might be the most powerful tool we have to combat the misunderstanding about this painful topic.
  • Improve marketing and activism around infertility. During the month of October, we begin to see pink ribbons everywhere in support of Breast Cancer Awareness month. But, that wasn’t always the case. Breast cancer was once a taboo topic too. Thanks to outspoken activists in the 1970s and eventually the pink ribbon campaign in the 1990s, breast cancer is now something that women can come forward and discuss with confidence instead of shame. Infertility needs that same kind of movement. Although the National Infertility Association has week dedicated to infertility awareness, I think a more unified, cohesive marketing effort to raise awareness would help bring this issue to light.

I don’t pretend to have all the answers, but I hope to do my part to break the taboo of infertility by opening up and talking more about it.

It won’t solve the problem, but it’s a start.

I’d love to know — why do you think infertility is so taboo? And what do you think we can do to change that?