Infertility: The invisible disease

Infertility Resources
April 14, 2020

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At the beginning of this year, we (Orchid Experience) did a 5-class workshop series for couples facing infertility. In one particular discussion during this workshop, one of the couple’s mentioned how easy it was to hide their infertility from the world. At that moment we all recognized that couples going through infertility generally look normal, sound normal, and have no identifying markers that make it obvious that they are suffering through a difficult medical diagnosis. Infertility is an invisible disease.

We’ve been there. Someone asks “When are you going to have kids?” At this point, you have your response down to a “T.” “We’re going to get a puppy first.” Secretly you’ve been seeing your reproductive endocrinologist (RE) every other day for the past two weeks as you wait for the trigger shot during your 5th round of some form of assisted reproductive technology (ART). Inside you know what the issue is, or that it’s unknown (“unexplained” infertility). It’s easy to hide. You don’t wear a medical ID bracelet that tells the world your issues. You don’t have to wear a special garment to help with a symptom. You go about your day just like any other couple of childbearing ages.

So what!?

Well, this comes with several issues. First, you wouldn’t be reading this if it hasn’t affected you in some shape or form. Maybe it’s not even you, maybe it’s a friend or a relative that you know that has been affected by this disease.

For those of us that are experiencing infertility the questions are the worst. “When are you having kids?” “Are you going to have more children?” Each time, you’re asked, even if you’re honest, a little piece of you (or your hope) dies. It’s tough! What do you say? Do you pour out your emotions to a potential stranger? Do you say something sarcastic? Do you lie? There are a few PSAs out there on how to address this on either side of the conversation. We wrote one. Did you see it? We thought it was so important we made it our second post behind our list of resources. Check out our infertility etiquette post and share it with your friends and family, really anyone you know that is or has any interaction with humans able to reproduce. (Yup, that’s literally everyone!)

After you got the above question and answered honestly, many people will respond with “but you’re young and healthy! You’ll have a family of your own someday.” Well, that can be a false promise. How does that person know anyhow? They actually don’t. They’re more than likely unaware of how many people can’t have children of their own, AND they might just want to ease your feelings by giving you hope. But hope isn’t the answer. Hope won’t get you pregnant (unless your RE’s name is “Hope”). This leads me to the next point.

Deniability and “Why me?” Even if you aren’t (or haven’t) experienced infertility you’ve probably asked yourself this question (related to something else). You’re young and healthy so why can’t you “just” get pregnant like everyone else? And then when enough people tell you that “you’ll have your own children one day” you might start to deny that you have a problem getting pregnant.

Lastly, since you look normal, you can hide your infertility. You get tired of fielding the questions. You get tired of the baseless hope. And you get tired of convincing yourself that there’s nothing wrong and you know that you’ll just get pregnant one day when you least expect it. So you hide the issue from everyone and from yourself.

The problem with all of this is that it’s not productive. In this month of infertility awareness, we encourage you to look at your issue in the face. Start by exploring your feelings around this issue. Start by journaling, and learning where you have room to explore and grow. Next, maybe have a conversation with a family member or close friend. Spreading awareness increases tolerance and decreases the false hopes around the problem. The more people that are aware the less likely someone is to ask you the question “when are you going to have kids.” Think about it! Do you think twice before asking someone that very same question? So let’s make this world a little more aware! Take a moment to share one of our social media posts on Facebook or Instagram or share the posts of other #infertilitywarriors out there and let those out there suffering in silence know that they’re not alone.