#StartAsking How We Can End the Silence

Infertility can be a lonely path. But it doesn’t have to be. In honor of Resolve’s National Infertility Awareness Week, I am going to #StartAsking.

I will #StartAsking how I can share my story and help end the silence that surrounds infertility and pregnancy loss.

Infertility is an invisible disease.  Most people would never guess that Alex and I have been struggling with infertility for over two years. No one at my place of work, nor any of my extended family, knows that we did IVF. Or that it took us nearly two years, two surgeries, three IUI’s, one IVF, and one FET to achieve a pregnancy . Or that we lost that first little embryo, “Brodie,” at 9 weeks gestation despite seeing a healthy heartbeat on the ultrasound just a few days before.

After my miscarriage, I  started to think about how bizarre it is that so many women like me struggle in silence. There have been a record number of pregnancies at work this year – eight (!!) instead of the usual one or two .  For a short time, I was part of that club, even if no one knew it. After I miscarried, other women announced their pregnancies. First, women who were due in June like I had been. Then, women due in July or August or September. As they walked past me in the hallway, I would marvel at what a difference a few weeks makes.  These ladies were just like me, only their pregnancies had lasted into the second trimester, and that made all the difference. Their babies  were acknowledged and celebrated.  The moms-to-be were given support and encouragement as their pregnancies progressed.

For Alex and me, it’s as if our pregnancy never occurred.  Even our immediate families, who knew about the miscarriage and were incredibly supportive in the days following our loss, have since ceased to talk or ask about our infertility journey.

Why is it so taboo to talk about infertility and miscarriage?

1 in 8 couples struggle with infertility

10-20% of pregnancies end in miscarriage.

There are a hell of a lot of us out here, experiencing this, every day. Why, then, does no one talk about it?

I think a lot of the stigma around miscarriage comes from a misguided attempt to “protect” women.  Because miscarriage is so common in early pregnancy, women are advised to  keep their pregnancies secret until the second trimester.  I get this. I really do.   By not announcing early, you save yourself the heartbreak of having to repeatedly share bad news if you miscarry. You also won’t have to listen to misguided platitudes, such as “everything happens for a reason” or “at least you can get pregnant.” 

But sometimes the advice  of waiting till the second trimester begins to feel less like advice and more like an oppressive social expectation. Maybe it’s just me, but I feel like society gets pretty judgemental towards women who are bold enough to announce pregnancies before 14 weeks. As if by announcing too early, women are tempting fate and almost asking to miscarry.

Instead of protecting women, we’ve created a culture of silence.  Many women don’t realize how common miscarriage is until they’ve experienced it themselves. The same goes for infertility.  I didn’t realize my own parents experienced infertility until I was 29 years old.

You know what’s even worse? This culture of silence results in a lack of support and empathy for couples who do miscarry. Couples are encouraged to keep their pregnancies to themselves for their own emotional well-being.  But by doing so, they sacrifice the support of family and friends during one of the most difficult times of their lives.

I told my parents and best friend that I was pregnant at just 4 weeks. When people know you’ve just done IVF, it becomes challenging to keep it on the down-low. But I still hated telling people. The fear of it not working out was so intense.  After we announced to my parents, I had a mini-meltdown. I was so worried that if I miscarried, I would be causing them unnecessary sadness.

But, then I did miscarry. And I realized that I didn’t regret one thing. If I had it to do over again, I would still share the news with those closest to me. The silver lining of my miscarriage was that my parents and friends were there for us every step of the way. I’m a talker – I need to verbally rehash the hard stuff in my life to come to terms with it. So, after my miscarriage my Mom, my Dad, and my best friend got the play by play of our story. And while they probably could have done without hearing all the gritty details of a 9 week miscarriage, I could not have handled the miscarriage as well without their support.

This brings me back to those pregnant coworkers. Couples struggling with infertility and miscarriage deserve the support and kindness of their communities too. I don’t expect us to be treated exactly like pregnant women.  Our situation is pretty  different than that of my pregnant coworkers.  Plus, people on the street can actually SEE their growing bellies or the chubby faces of their newborns – and that makes all the difference when it comes to empathy and support.

So, what am I asking for then?: For friends and family to #StartAsking how they can acknowledge the struggles of infertile couples and support them on their journeys.

Our experiences are REAL. Our struggles and heartbreak are REAL. Don’t let anyone tell you otherwise. Be kind to yourself. Ask for support. Grieve for your losses, no matter how “small” someone else might deem them.

Unless they’ve gone through it themselves, many people don’t realize how deep of a loss a failed cycle can be. Many people do not understand how you can grieve for a baby that never “existed.” But we do. Many of us have been holding the hope a child – our child – in our hearts for much longer than 9 months. For Alex and me, it has been 26 months. For many others, it has been even longer.

I’m going to go out on a limb here and say that most of your friends and family want to support you. Sometimes they just don’t know how.  It is up to us to tell our stories and educate those closest to us. Highlight the fact that infertility is a disease and often requires treatment. Let others know about the emotional impacts of infertility and pregnancy loss  – that studies have shown the stress of infertility can be comparable to that of women with  cancer or heart disease. Share Resolve’s fact sheet on Coping with Infertility: How Friends and Family Can Help.

And, last but not least, I will #StartAsking how I can be an active member of the infertility community and support my fellow warriors.

This brings me back to my first point: Infertility can be a lonely and isolating experience. But it doesn’t have to be.  While my journey has been hard at times, it would have been a hell of a lot worse if not for a number of cool people. While I don’t know anyone in my day to day life that is currently going through infertility, support has come from some unlikely places. Specifically, the internet.  These two resources are my current favorites, but they are just the tip of the iceberg:

Heartships of Hope: About a year into my infertility journey, I discovered the infertility community on Youtube. These brave ladies put themselves out there and share all the gritty details of their struggles. In particular, Heartships of Hope made me fee like I wasn’t so alone after I miscarried. I don’t know Kaela, nor have I ever posted on Youtube, but I sooo related to her experience of miscarrying after IVF.

Beat Infertility: A few months ago, I discovered Heather Huhman’s podcast, Beat Infertility.  Every week, Heather interviews women who have “beat” infertility -through fertility treatments, adoption, or deciding to live child-free.  Many of these women have been through far more than I have: years of infertility, multiple miscarriages, stillbirth, etc.  The podcast also features experts – doctors, therapists, nutritionists – who discuss the medical and emotional sides of infertility. Listening to the podcast helps me stay positive and remember to be kind to myself. If these women can stay hopeful, I can too. There is also a Beat Infertility Community where women can share experiences, advice and support through social media.

As I said, this is just the tip of the iceberg. The strength and vitality of the infertility community is astounding.  Technology has allowed us to break down the walls of isolation and share knowledge in ways that were never possible before.  From the comfort of my couch, I can watch real women explain what an HSG feels like, how to give an intramuscular injection, or what to expect after an IVF egg retrieval.

I know it’s cliche, but knowledge is power. And this grassroots movement to improve women’s access to information on their healthcare has become a force to be reckoned with. This year, I pledge to add one more small voice to the chorus.

 

 

 

 

 

 

 

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