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1 in 8 couples either have trouble getting pregnant or sustaining a pregnancy. That means that out of a group of you and seven of your friends, one of you will struggle to conceive. The pregnancy loss statistics are even more staggering: 1 in 4 known pregnancies end in miscarriage.
But if fertility issues are so common, why aren’t they talked about more often? Why are so many women, and men, still suffering in silence?
If like me, you have had the unique displeasure of sitting in the waiting room of a fertility clinic, you know there is no shortage of patients there; and yet, they are almost all avoiding eye contact with one another. In fact, in the year I spent regularly undergoing fertility treatments, I rarely even saw anyone looking up from their phone.
So, why is it that in the one place where you can actually find people going through a similar experience, no one even so much as says hello, let alone offers their support? If that doesn’t paint a clear picture of the stigma surrounding infertility, I’m not sure what does.
In sex-ed growing up, we are taught, “If you have sex, you will get pregnant.” In the movies, all we see are accidental pregnancies. But for the millions of people globally who struggle to conceive, it’s not as easy as we have all been made to believe. And as a result, infertility can bring with it a sense of shame, guilt, and the feeling that your body isn’t doing what it is supposed to.
It’s not an easy place to be, especially when it seems like everyone around you is getting pregnant so easily, and social media is peppered with pregnancy announcements and baby photos.
Thankfully, there are a bunch of amazing ladies in the infertility community who are making their voices heard and advocating tirelessly to help end the stigma surrounding infertility and pregnancy loss, and to make sure that no one has to go through this alone.
In honor of National Infertility Awareness Week, we asked each of these women what they wish they had known about infertility—if people actually talked about it. Here is what they said:
Infertility is out of your control.
"What do roller coasters, sky diving & infertility have in common? They bring an ironically perfect combination of fear & excitement, highlighting that you have little control. There are many things I wish I would've known about infertility but the fact that you have no control tops the list. No control over your body (weight gain, mental fogginess, bloating - you are a science experiment), no control over your emotions (crying outbreaks, full-blown bitch mode out of nowhere, irritability, etc.), no control over timing (there is A LOT of waiting with infertility) & no control on whether or not the treatments you seek will result in the ultimate goal of bringing home a baby. For all of these reasons, infertility has taught me to be more patient & has given me so much more respect for the human body, science/doctors, and the miracle of life."
—Blair Nelson, Fab IVF Mama
Infertility affects every aspect of your life.
"I wish I would have known that infertility touches all aspects of your life- physical, emotional, mental, financial, career, friends, family- there's no part of your daily life it doesn't affect. Because of this, my advice to women just starting down the road of fertility treatments would be to find a support group or community of other women also experiencing infertility- no one will understand what you're going through like they will!"
—Jenna Williams
It’s okay to seek help.
“I wish someone would have told us about Reproductive Endocrinologists or the support we could gain from our family and friends. We didn't know much about fertility treatments in the beginning, except that they felt scary, intimidating, overwhelming, and expensive. But, by seeing a Reproductive Endocrinologist early on in our journey, we could have learned more about our fertility health and understood the process of building our family to help ease some of our anxieties. We put so much blame on ourselves in the beginning, that we didn't even realize that what we were going through is a medical condition that affects 1 in 8 couples. My husband and I often felt embarrassed and ‘less than’ because we struggled to conceive. It was a very lonely and emotional time in our lives. Once we asked for help, a huge weight was lifted off of our shoulders. We started to feel supported and encouraged to take the next steps to grow our family, and we were able to begin healing our hearts. I only wish we would have known to do it sooner.”
—Tara Engelberg
photo credit: Chelsea Ritchie
You don’t have to settle for the first fertility doctor you see.
“I wish I knew the value of finding the right doctor for me, and not just the first doctor who had an opening to consult. I wish I had dug around, asked more questions, and realized it was okay to not be satisfied with ‘it's just bad luck.’ I wish I had remembered that I was paying for a service—a collaborative relationship—and didn't need to be satisfied with a cookie-cutter connection.
—Chelsea Ritchie
Infertility is a process of trial and error.
“You cannot research your way to a perfect cycle. Despite my best efforts to study and prep before treatment, the hiccups or less-than-ideal outcomes were both devastating and shocking. Looking back, I know the shock came because nobody directly told me that everybody reacts differently to different techniques and drugs. I wish I'd known this so I didn't shame myself into thinking my decisions or my body (or that hot tub night 3 years prior) were a part of the problem. I thought money and medicine would provide success, and when they didn't I blamed myself. The truth is, sometimes it takes trial and error to find what works best for every person, making some journeys longer than others. The length of time you're in treatment does not mean you or your body are failing, it just means there may be a different approach that will work better for you. We all know the shame of feeling like our bodies are failing us, and I think knowing that they may not respond well to medicine is scary, but it's also somewhat of a relief. Once I realized this I was better able to prepare myself for the next round without extra guilt or pressure.”
—Lindsay Fischer
There are no guarantees in the infertility world.
“Before receiving my infertility diagnosis, I had no idea about the giant unknown that comes with infertility. I thought that people who underwent treatments gave themselves a few stomach and butt shots, and ended up with twins - guaranteed. Yes, that's right. I was that naive. I had no idea that ending up with a baby could take multiple rounds of treatments, and years of emotional, mental, and physical pain. Or that sometimes no amount of treatment, money, pain, and suffering results in a baby. Because of the limbo you are in while battling infertility, wondering if a baby will ever come, your entire life ends up feeling like it is suspended and on hold. And for those that do get a positive test, the mental and emotional strain do not end. The PTSD of infertility is real - and can carry through pregnancy and after you bring a baby home. You get so used to being in limbo and being emotionally distraught, that it is hard to allow yourself to just be happy if you do get pregnant. I wish I knew more about the unknown and had time to mentally prepare for how the limbo and unknown would impact my entire life.”
—Monica Caron
IVF doesn’t always work.
“Before starting IVF almost 3 years ago I wish someone had told me that it doesn’t always work on the first try (or second or third…). I went into IVF excited and naive. I knew it could possibly not work, but I never thought that would happen to me, I mean, I carried twins (via IUI) to 37.5 weeks, so I know my body is very capable of holding a pregnancy! I also didn’t realize that getting good-quality embryos was not a guarantee. I thought, okay, they extract my eggs, and then we will have that many embryos to work with! We will get to choose the gender and boom! We will be pregnant with our gender of choice three months later. Well, here we are, almost 3 years later, after 4 egg retrievals, one D&C, and 7 transfers. I never thought that would be me. I never thought I would be on this journey for this long. I never knew it could take this long and this many tries for something to work.”
—Erin Bulcao
Your grief is valid.
“I wish I had known how much a failed IVF transfer felt like a miscarriage. I was never technically ‘pregnant,’ I should just look at this as a failed attempt to be pregnant, right? I’m sorry, but that is not at all what this feels like. I did lose my pregnancy. Actually no, I lost my baby. I saw its picture, I saw it placed inside of me on a TV screen, it was moving, it was alive, and it had a gender (which I can’t bring myself to ask about). Heartbeat or no heartbeat that was my baby. I saw the life inside of me. There will be no funeral or bereavement leave, we just have to pick up the pieces and live on. I was very hard on myself for having such dark feelings when this happened, because I didn't feel like I had the right to grieve. My loss was invisible to everyone, but me. I now know that this grief is valid and this is a real loss, of a child, a family vision, a love for someone who lived inside of you, if only for a day. My grief is valid.”
—Victoria Nino, Infertility Unfiltered
People don’t always know the right thing to say.
“I wish I had known that people would say daft things to me (are you ‘doing it right’?!), and I was normal to react in the way that I did. Frustrated, annoyed, and like I wanted to scream! I didn’t know many people experiencing infertility when I was going through many rounds of treatment and no one seemed to understand. Knowing that there is a huge, wonderful, and compassionate community of support from others who do, would have made it all so much easier.”
—Alice Rose
Despite all your friends, you still feel alone.
“Here’s the thing about infertility: you can read all the articles, listen to all the podcasts and talk to as many warriors as you want, but like so many traumas you’ll never REALLY understand the specific shade of heartbreak unless you yourself have gone through it. I wish I had known that despite having an A+ support system (understanding parents, patient in-laws, empathetic friends, and a loving partner), I would *still* feel devastatingly alone. I wish I’d known that no one would ever say the right thing or ask the right question or support me in the right way. That people were either too positive or too flippant or too honest or too self-absorbed. I was goldilocks, and none of their support felt just right. No one outside of this pineapple-obsessed community can truly understand what we’re going through. This is what inspired me to create Fruitful Fertility and it’s why I work every day to make sure we all have SOMEONE to talk to who knows the acronyms, understands your diagnosis, and gets the fear and the grief and the waiting. The only thing that makes it bearable is finding your pineapple people. The infertility club sucks, but the club members? They’re awesome.”
—Elyse Ash
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photo credit: Arielle Spiegel
Infertility friends are the best friends.
When I first realized I was having fertility challenges, it was shocking. I hadn't heard of anyone else having these types of issues, because nobody ever talks about infertility. But once I started opening up about these struggles, I learned that infertility affected many others—including lots of people I already knew, but had no idea about their fertility issues. Old friendships were rekindled and strengthened, but also, new friendships were formed. Whether introduced through other friends or created via social media, I now had an unintended ‘silver lining’ side effect of infertility: a whole new network of friends who totally understood what I was going through. These became the people I leaned on the most during my fertility journey throughout every procedure, loss, or a bit of good news. But they also became actual, real-life friends with tons of stuff in common besides infertility. I wish I had known at the start of my fertility journey that I'd have such a strong support system. In the beginning, I felt super alone...like nobody I talked to really ‘got it.’ Obviously, the hope is that everyone who wants a baby has a short path to get there. But if not, I would tell my former self that I'd get through this—because I'd have a tribe of warriors standing beside me.
-Arielle Spiegel, CoFertility
Having a community changes everything.
For the first 3 years, I went through this alone. By alone I mean - I didn’t know anyone who has gone through this too and could actually understand. Then, I found the wonderful community on Instagram. I immediately felt like I could exhale after 3 years of holding my breath. I found a good therapist who was an IVF veteran and I connected with a coach. TOTAL game changer!
—Ashley Fina
You don’t have to do this alone.
“I wish I knew how painful and lonely this journey would be. When we officially decided to pursue IVF we didn’t tell many people. Only a few close family and friends. Even then we never shared the details and nuances of the day-to-day life of IVF. After our first cycle failed with absolutely zero embryos, the devastation was real. I completely shut down and isolated myself from the world, my family, my friends, and my co-workers. I was utterly broken and defeated. It took months to climb out of the darkness. Years to finally open up and realize I’m not alone. I only wish I had known to find my tribe and support system. This journey is too hard to do alone!”
—Dina Wilson
It's okay to walk away.
“No one told me that walking away from treatment is a valid and worthy option for some. No one explained to me the extent of mental anguish associated with failed cycle after failed cycle, and that I could allow myself to give up, even if I could afford financially to go on. I learned on my own just how strong I really am, and use my voice and my platform to share that knowledge with the rest of the infertility community. Those going through family building with medical assistance need to be educated equally on the full spectrum of outcomes; including the option to walk away.”
—Tia Gendusa
Infertility is the worst club with the best members.
“If I could go back and give myself one piece of advice while I was going through four years of secondary infertility hell, it would be this: You are not alone. Throughout my journey, including four miscarriages and deep depression, I felt isolated and lonely, because I didn't know anyone who was going through exactly what I was going through. I was desperate to connect to people in the infertility community, but six years ago, it really didn't exist. My friends and family were amazing, but they weren't IN IT like I was, so as much as we'd talk about it, they couldn't entirely relate. There weren't many good resources yet, either. Thankfully, this has changed exponentially in the past six years, and now the community is huge, and most importantly, vocal. I started my podcast, Infertile AF, in March 2019 with a mission to share stories--all kinds of stories--about infertility and building modern families. In October, I'm co-hosting Fertility Rally, a live event where we will all come together IRL. People are talking about infertility and miscarriages and IVF now. The stigmas are being broken. We still have a ways to go, but we are all working hard to make everyone feel less alone on their journeys. I wish I had known that I was not alone then, but for everyone going through it now, I'm so glad the conversation is being had and the stories are being shared. We are all in this together.”
—Ali Prato, InfertileAF Podcast
Infertility will never leave you.
“Things No One Told Me About Infertility: That I would have a close relationship with an ultrasound wand. That anyone who attempts to use the word ‘just’ before a sentence regarding the functionality of my lady bits or his nether regions may be susceptible to bodily harm. That sex, weird advice, treatment, adoption or any other option may or MAY NOT work. Not everyone ends their journey with diapers and baby snuggles. That my tears and scars are not in vain. That this community is small yet mighty, and I would meet some of the most empowering, badass, thrivers that I now call best friends. Infertility will never leave you. No matter your ending, and that’s okay. I am more aware, more empathetic, most of all I am a better mother because of it.”
—Candace Wohl
What do you wish someone had told you about infertility?
