Infertility: the untold realities
1 in 8 couples either struggle to conceive or to sustain a pregnancy. And by that maths, in a group of you and seven friends, one will face difficulties conceiving. The pregnancy loss statistics are even more staggering: 1 in 4 pregnancies end in miscarriage.
But if fertility issues are so common, why aren’t they talked about more openly? Why are so many women – and men – still suffering in silence? That’s why we founded The Ribbon Box: to help break the stigma, spark conversation, and share resources that truly make a difference.
The dreaded waiting room
If, like us, you’ve had the unique displeasure of sitting in the waiting room of a fertility clinic, you’ll know there’s no shortage of patients. Yet almost everyone avoids eye contact. In fact, in the year I spent regularly undergoing fertility treatments, I rarely saw anyone look up from their phone.
So why is it that, in the one place where you’re surrounded by people going through something so difficult, no one wants to give that nod of encouragement, or relatability? If that doesn’t highlight the stigma surrounding infertility, we don’t know what does.
The myths we grew up with
In 90s sex-ed, we were taught: “If you have sex, you will get pregnant.” On-screen, it’s all accidental pregnancies. But for 1 in 8 couples, it’s nothing like that. Infertility brings with it shame, guilt and the sense that your body isn’t working the way it “should.”
It’s an incredibly lonely place to be – especially when it feels like everyone else is getting pregnant with ease, and your social feeds are flooded with family life. People you’ve followed for years move on, and bit by bit kids are woven into their content, necessitating a regular, guilt-laden cull.
Breaking the silence
Thankfully, there are incredible people in the infertility community who are speaking up, sharing their stories and advocating tirelessly to end the stigma surrounding infertility and pregnancy loss. Their work makes sure no one has to go through this alone.
Recently, America marked National Infertility Awareness Week. We asked a group of women what they wish they’d known about infertility – if people actually talked about it. Even though the week has ended, we’ve teamed up with our friends at The Fertility Tribe to share their words far and wide, so more people feel less alone.
Here’s what they told us:
Infertility is out of your control
“What do roller coasters, skydiving, and infertility have in common? They bring an ironically perfect combination of fear and excitement, highlighting that you have little control.
There are many things I wish I’d 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’re a science experiment), no control over your emotions (crying outbreaks, full-blown b*tch mode out of nowhere, irritability), no control over timing (there is A LOT of waiting), and no control over whether treatments will lead to the ultimate goal of bringing home a baby.
For all of these reasons, infertility has taught me patience and given me so much more respect for the human body, science, doctors and the miracle of life.”
– Blair Nelson, Fab Fertility
Infertility affects every aspect of your life
“I wish I had known that infertility touches every part of your life – physical, emotional, mental, financial, career, friends, family. There’s no area it doesn’t affect.
Because of this, my advice to women just starting fertility treatments would be: find a support group or community of other women going through infertility. No one will understand what you’re experiencing like they will.”
– Jenna Williams
It’s okay to seek help
“I wish someone had told us about fertility specialists or the support we could gain from family and friends. We didn’t know much about fertility treatment in the beginning – only that they felt scary, intimidating, overwhelming, and expensive.
By seeing a fertility specialist early on in our trying-to-conceive journey, we could have learned more about our fertility health and understood the process of building our family, which might have eased some of our anxieties. Instead, we put so much blame on ourselves. We didn’t realise 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. Once we asked for help, a huge weight lifted from our shoulders. We started to feel supported and encouraged to take the next steps to grow our family, and we began healing our hearts. I only wish we’d known to do it sooner.”
– Tara Engelberg
You don’t have to settle for the first fertility specialist you see
“I wish I knew the value of finding the right doctor for me – not just the first doctor with an opening. I wish I’d asked more questions, dug deeper, and realised it was okay to be dissatisfied with a dismissive ‘it’s just bad luck.’
I wish I’d remembered that I was paying for a service – a collaborative relationship – and that I didn’t have to accept a cookie-cutter approach.”
– Chelsea Ritchie
Infertility is a process of trial and error
“You cannot research your way to a perfect cycle. Despite my best efforts – reading IVF blogs, studying, preparing – the hiccups and less-than-ideal outcomes were devastating and shocking. Looking back, I know the shock came because nobody told me that everybody reacts differently to different techniques and drugs.
I wish I’d known this so I wouldn’t have shamed myself into thinking my decisions, my body, or even that hot tub night three years prior were part of the problem. I thought money and medicine would guarantee success, and when they didn’t, I blamed myself.
The truth is, sometimes it takes trial and error to find what works best, and that can make the journey longer than you expect. The length of your treatment doesn’t mean you or your body are failing – it just means a different approach may be needed. Knowing this is scary, but also a relief. Once I realised it, I was better able to prepare for the next round without piling on guilt or pressure.”
– Lindsay Fischer, InfertileAF Community
There are no guarantees in the infertility world
“Before my infertility diagnosis, I had no idea about the giant unknown that comes with infertility. I thought people who underwent treatment gave themselves a few stomach and butt shots, then ended up with twins – guaranteed. Yes, that naive.
I didn’t know it could take multiple rounds, or years of emotional, mental, and physical pain. Or that sometimes no amount of treatment, money, or suffering results in a baby. That limbo – wondering if a baby will ever come – suspends your whole life.
And for those who do get a positive test, the mental and emotional strain doesn’t end. The PTSD of infertility is real and can carry on through pregnancy and even after you bring a baby home. You get so used to being in limbo and distraught that it can be hard to let yourself feel joy if you do get pregnant.
I wish I had known more about the unknowns, and had time to prepare for how much the uncertainty would impact my entire life.”
– Monica Caron
IVF doesn’t always work
“Before starting IVF almost three years ago, I wish someone had told me that it doesn’t always work on the first try – or the second, or the third. I went in excited and naive. I knew it might not work, but I never thought that would happen to me. I’d carried twins (via IUI) to 37.5 weeks, so I knew my body could hold a pregnancy!
I didn’t realise that good-quality embryos weren’t guaranteed. I thought, okay, they’ll extract my eggs, we’ll have that many embryos, we’ll get to choose the gender, and boom – pregnant three months later.
Well, here we are almost three years later: four egg retrievals, one D&C, seven transfers. I never thought I’d be on this journey for this long. I never knew it could take so many tries, and so much time, for something to finally work.”
– Erin Bulcao
Your grief is valid
“I wish I had known how much a failed IVF transfer feels like a miscarriage. I was never technically ‘pregnant’ – I should just look at this as a failed attempt, right? I’m sorry, but that is not at all what it feels like.
I did lose my pregnancy. Actually no, I lost my baby. I saw its picture, I saw it placed inside 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.
But there is no funeral, no bereavement leave. You just pick up the pieces and carry on. I was very hard on myself for having such dark feelings, because I didn’t feel like I had the right to grieve. My baby loss was invisible to everyone – except me.
I now know that this grief is valid. It is a real loss – of a child, of a family vision, of love for someone who lived inside 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 – like, are you doing it right(?! ) – and that my reactions were completely normal. Frustrated, annoyed, wanting to scream.
I didn’t know many people going through infertility when I was navigating multiple rounds of treatment, and no one seemed to understand. If I had known about the huge, compassionate community of support out there, the whole experience would have been so much easier.”
– Alice Rose, @itscatandalice
Despite all your friends, you still feel alone
“Here’s the thing about infertility – you can read every article, follow all the blogs, listen to podcasts, and talk to as many warriors as you want. But like so many traumas, you’ll never really understand the heartbreak unless you’ve gone through it yourself.
I wish I had known that even with an A+ support system – understanding parents, patient in-laws, empathetic friends, a loving partner – I would still feel devastatingly alone. No one ever said the right thing, asked the right question, or supported me in the ‘right’ way. People were either too positive, too flippant, too honest, or too self-absorbed. I was Goldilocks, and nothing felt just right.
No one outside this pineapple-obsessed community can truly understand what we’re going through. That’s why I created Fruitful Fertility: so everyone has someone to talk to who knows the acronyms, understands the diagnoses, and gets the fear, the grief, and the waiting.
The infertility club sucks – but the club members? They’re awesome.”
– Elyse Ash, Fruitful Fertility
Infertility friends are the best friends
“When I first realised I was having fertility challenges, it was shocking. I hadn’t heard of anyone else with these issues – because nobody talks about infertility. But once I started opening up, I learned that so many others had faced it too, including people I already knew.
Old friendships rekindled and strengthened, and new ones were formed – sometimes through friends, sometimes through social media. Infertility brought an unexpected silver lining. A network of people who completely understood. They became the ones I leaned on most during procedures, losses, and even moments of good news. But they also became true friends, with plenty in common outside infertility.
I wish I’d known from the start that I’d have such a strong support system. At first I felt super alone, like no one really ‘got it.’ Obviously, the hope is that everyone’s path to a baby is short. But if not, I’d tell my former self, you will get through this – because you’ll find a tribe of warriors standing beside you.”
– Arielle Spiegel, CoFertility
Having a community changes everything
“For the first three years, I went through this alone. By alone, I mean I didn’t know anyone who’d been through it too – anyone who could truly understand. Then I found the wonderful community on Instagram.
I immediately felt like I could exhale, after three years of holding my breath. I also found a great fertility counsellor who was an IVF veteran, and I connected with a fertility 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, just a few close family and friends. Even then, we never shared the details or the day-to-day reality 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, my co-workers. I was utterly broken and defeated. It took months to climb out of the darkness, and years to finally open up and realise I wasn’t 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 fertility treatment is a valid and worthy option for some. No one explained the extent of the mental anguish associated with failed cycle after failed cycle, or that I could allow myself to stop, even if I could still afford to go on.
I learned on my own just how strong I really am, and now I use my voice and platform to share that knowledge with the rest of the infertility community. Those going through family building with medical assistance need to be educated on the full spectrum of outcomes – including the option to walk away.”
– Tia Gendusa, InfertileAF Community
Infertility is the worst club with the best members
“If I could go back and give myself one piece of advice whilst I was going through four years of secondary infertility hell, it would be this: You are not alone.
Throughout my journey (which involved four miscarriages and deep depression) I felt isolated and lonely, because I didn’t know anyone going through exactly what I was. I was desperate to connect with others 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 even when we talked, they couldn’t fully relate. There also weren’t many great resources yet.
Thankfully, this has changed exponentially. Now the community is huge, and most importantly, vocal. I started my podcast, Infertile AF, in March 2019 to share all kinds of stories about infertility and building modern families. In October, I’m co-hosting Fertility Rally, a live event where we can come together in real life.
People are talking about infertility, miscarriages, and IVF now. The stigmas are being broken. We still have a way to go, but we’re all working hard to make sure no one feels alone on their journey. I wish I’d known I wasn’t alone back then, but for those going through it now, I’m so glad the conversations are happening 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 uses the word ‘just’ in a sentence about my lady bits or his nether regions might be at risk of bodily harm.
– That sex, weird fertility advice, fertility 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 that I would meet some of the most empowering, badass thrivers I now call best friends.
Infertility will never leave you, no matter your ending and that’s okay. I am more aware, more empathetic, and most of all, I am a better mother because of it.”
What do you wish someone had told you about infertility?
This article was originally published on The Fertility Tribe.
