The True Cost of Infertility

There is so much that infertility steals from us. The “surprise, we’re pregnant” moments, the opportunity cost of the time dedicated to appointments, procedures and the like, and, for some, the possibility of ever having children. It’s the honest truth.

I sit here typing this today with my 20-month-old IVF baby napping in the room next door, grateful every day for her knowing very well that there was another ending to our story where that would not be the case. It is perhaps that awareness that makes it hard to share that harsh impacts of the toll of infertility. But, having a child doesn’t cure infertility, nor does it remedy the traumas and heartaches of going through infertility regardless of having your miracle baby in your arms.

Outside of the obvious substantial financial cost of the infertility treatments themself comes much bigger costs – the forever mark that the journey itself leaves on you. In this essay, I talk about our own experiences in navigating the infertility landscape, to retrospectively dissecting the impacts that will stay with me and, hopefully, what I think we can collectively do to lessen them.

It takes away your innocence
Before infertility, many people move through life assuming that if and when they decide to have a child, it will simply happen. After all, many of us were taught that holding a boy’s hand would lead to having a baby and ushered into taking birth control before understanding our cycles or not being taught the difference between withdrawal bleeds while on the pill and a true period. Infertility shatters any assumptions of things we never questioned as the truth. Suddenly, nothing feels guaranteed. You become acutely aware of how fragile plans can be, and how little control you truly have.

It changes your relationship with your body
You may feel at odds with your body, and perhaps even feel betrayed by it. Why isn’t it doing the “normal” function that biologically we were made to be able to do?! What once felt natural may now feel clinical, monitored, measured. Cycles become data. Ovulation becomes a target. Intimacy becomes scheduled. You may move from appreciation of your body to frustration, resentment, even anger toward it. The body that was once simply yours becomes a project, a problem to solve. 

It challenges your relationship with your partner
Trying to maximize your fertile window timing changes romance and intimacy. For those in heterosexual relationships, being very aware of the bias of focus on women’s infertility and role despite needing both gametes equally to make a baby. The balance of who is taking what supplements, going for endless tests and appointments, many involving blood draws and Wanda, while our partners have a lesser involvement and therefore less of a resulting feeling of self-blame when things don’t go as desired. 

It withdraws your privacy
Infertility invites doctors, nurses, and technicians into some of the most intimate parts of your life. Blood tests, scans (hi, Wanda), procedures — conversations about your body, your lifestyle, your sex life. Everything becomes available for scrutiny of the experts while you’re in a delicate stage. 

And then there’s the social side: Do you tell people and if so, who and at what stage? How do you take time off work while avoiding “have fun with your days off”, while you conceal your internal inferno of wanting to explain you’re not off for umbrella drinks and sunshine. If you share, you risk advice, platitudes, and invasive questions. If you don’t, you carry the weight alone and infertility is isolating as is. 

It takes financial freedom

I often think of what all of the costs of infertility could have been put to, frustrated at how little is covered by insurance or how concealed coverage information is (oh great, additional stress).

The tests, medications, supplements, acupuncture appointments, procedures – they all add up. On top of that, navigating the infertility ladder does a number on your decision-making (more on this later), resulting in going for expensive add-ons just to give yourselves the best chance and worrying what may happen if you didn’t include those elements in your approach.

The financial commitment to infertility can shape career decisions – I have often read of many taking second jobs with employers who have infertility benefits despite the job role being unaligned with their career goals.
Money that might have gone toward building a future can instead go toward trying to make that future possible.

It takes mental space (and a lot of it)

Infertility becomes part of your identity. Still now, with my IVF baby earth side, it has left its mark on me and brings a lot of negative emotions from our journey especially now navigating it all over again for baby #2. On top of all the expected mindshare that IVF and infertility takes, is working with a system that doesn’t always support you. I have experienced countless shortcomings of fertility clinics and clinical teams, with outcome-altering impacts, increasing the onus on you to steer the ship, ask additional questions, and live in a space where you can’t avoid the weight of each and every input.

Like it or not, you begin to partake in infertility gambling – “this next cycle is going to be it”, “if I do X and Z, surely we’ll get healthy embryos”, “just one more round”.

Infertility takes residence and conflicts with mental wellbeing. Living in the cyclical nature of infertility can make you feel like you’re on a merry-go-round that you’re waiting to get off only to feel dizzier with each rotation. It’s exhausting to live in the constant state of hope. 

It can also make you feel crazy. After all, insanity is the definition of doing the same thing over again and expecting different results, and many of us aren’t as fortunate to have 1 cycle of intervention resulting in 1 healthy baby. There’s the constant refreshing of portals or checking your phone for lab results, medication instruction changes, trigger shot instructions…I had what I can only call phantom phone ringing syndrome – I thought I heard my phone ring so frequently when it was a day I was expecting one of these pivotal calls.

Then, for those who are fortunate to get to the pregnancy stage, whether yourself or your surrogate, the anxiety and mental gymnastics doesn’t end. The very attuned awareness of knowing perhaps too much once you enter the infertility arena and community makes it harder to full enjoy this typically joyous stage. 

It morphs your sense of time
Your menstrual cycle, two-week waits, 5-7 days of embryo development updates, milestone scans and awaiting any result…how do you measure these periods of time when you’re abiding by the infertility clock? Time drags between each appointment and update and only contributes to the mental challenges that infertility inherently brings.

Becoming Unsocial

Whether or not you’ve decided to share where you are on your infertility journey, it will trickle into your social life and interactions. 

Whether it’s not feeling comfortable attending baby showers or birthdays, skipping family events knowing Auntie is bound to ask “when are you having kids?, or having to miss plans because you’ve committed to infertility treatments or have to vehemently avoid getting sick (hello fellow COVID-era infertility warriors), the social sacrifice of infertility is often overlooked. I missed two weddings of close friends due to travel and conflicting IVF schedules, my professionalism took a hit as I was unable to go to conferences farther away, and we missed many social events and even going on date nights in the fear of getting sick. Perhaps superfluous for some, but our infertility journey started in the thick of COVID, whereby I attended all appointments and procedures by myself, and had to both test negative 48 hours before our retrievals. 

While many will want to understand the best they can, it is hard to know what language to use. Even in my position, I often find myself replaying things I’ve said to others, being unsure if I was received the way I intended. 

It reframes your identity
For many, the idea of becoming a parent is woven deeply into their sense of self. When that path is uncertain, it can leave you questioning who you are, who you are becoming, and how you fit into a world that often assumes parenthood as a default.

As someone fortunate enough to have our baby, I experienced immense survivor’s guilt – something I haven’t heard anyone else talk about. When you’re so immersed in the infertility community and have connections with others, whether they are true strangers with a Finsta and an obscure chat-board name that captures their hope for becoming a parent, or close friends that you walking through the infertility terrain together, there becomes a time when you “graduate” and they are still stuck in the trenches. While you may offer to continue to hold hands through their journey, wishing your story offers more hope than hurt, there is an inevitable distance forming that can fray the relationship. Not only does this graduation (a term often used when you are 10-12 weeks pregnant and move your care from your REI to your OBGYN) change your relationship to those still living the infertility merry-go-round, but it  displaces you in this delicate part of your journey: you don’t quite fit into the “babydust and stick vibes” group, nor can you relate to those who didn’t endure this path to baby. This is really what challenged me in continuing to share our infertility journey or motherhood journey, and where my desire to create Best Members Club came from (a total teaser for what’s to come with this passion project that’s been brewing for years).

If you’re still with me, take a deep breath. Put your hands on your heart, close your eyes and take some time to give love back to your body, mind and soul. In the internality space, success is often measured in the outcome of a healthy baby. This is so dangerous, but it’s the verbiage we often all used – “it was a successful cycle” or “we had success when we did X”. This only sets us up for feeling like utter failures when we don’t achieve that end goal. Success to me, is getting through the journey regardless of the outcome: every retrieval that doesn’t yield health embryos, or even not as many as predicted, every transfer that don’t get to bring a healthy baby home, every anniversary of the baby that should have been. Make space to acknowledge and celebrate the challenging path and experiences you got through, with grace or grit or both, because that is what success truly is.

 And while infertility takes a lot, it also gives too. Not in the ways you asked for, but it gives nonetheless.

It gives you resilience: a newfound strength that carries you through the hardest moments. It gives clarity: a different perspective on life and those around you for what matters most. It gives you advocacy: I unleashed my inner roar in speaking up for myself and the patient experience, whereby my former self would be too reserved to potentially offend someone. It gives you community: the infertility warriors I’ve been fortunate to connect with has forever changed me. 

The true cost of infertility is how life-altering it is in all the ways it takes residence and demands your attention. Know you are never alone in this journey, whatever stage of it you’re in. I hope that you stand with a little more pride in all you’ve had to conquer to get there.

Sending love to all.