How to talk about infertility

Two weeks ago — and a mere five days after my last failed in-vitro fertilization (IVF) embryo transfer — I started up the estrogen again for another frozen embryo transfer (FET). This will be our sixth attempted transfer (our third with donor egg embryos), and it got me thinking about why I started this blog in the first place.

It was partly to keep our close friends and family up-to-date on our progress, since it’s well known that I’m terrible at phone calls or keeping in touch in general*. But it was also to help shed light on a process which is often endured in secret. As a result, many well-meaning folks have no idea how to talk about infertility.

For instance, imagine that you’ve been trying to conceive (TTC) for not just months, but years. Imagine everyone else around you continues to fall pregnant. Imagine you’ve tried everything you could think of to help your body and mind: exercise, yoga, mindfulness, vitamins, time off work, drastic diet changes, numerous specialists, some weird Chinese massage guy who asked you to bring a jar of your own pee to the first appointment**, and etc, etc. Imagine you’ve slowly and painfully come to the devastating realization that you will never get pregnant without countless injections, hormone supplements, and surgeries, and that even then, (in my case), there is literally zero chance that it will ever be with your own eggs.

Now imagine that someone who had their kids naturally tells you “It will happen!”

Be honest: do you sort of want to punch them?

It’s for just this reason that many people choose not to talk about their infertility struggles with friends/family in the first place. For example, this is precisely the reason that my fellow IVF’er Elizabeth hasn’t told her mother. “The things she would say…I’d kill her! She’s safer not knowing.”

What not to say

Since coming out about our own (5+ year) infertility journey, my husband and I have definitely gotten our fair share of tone-deaf comments and unsolicited advice. While I obviously try to focus on the underlying good intention, it can be quite difficult when you’re hearing a similar comment for the Nth time. And so, in the spirit of education, here is some unsolicited advice back on what NOT to say to someone who is struggling with an infertility diagnosis:

  1. “I struggled to get pregnant too…it took us [X] months.” Many people say something like this in an attempt to empathize. However, to someone with an infertility diagnosis, this is like comparing the minor engine trouble you had on your boat to the sinking of the Titanic. There’s a huge difference between having sex with your partner for a few months in a row and resorting to assisted reproductive technology. I understand the desire to relate, but it’s probably best to keep this to yourself.
  2. “My friend’s nephew’s dermatologist did IVF and she has two beautiful children!” That’s great. I’m very happy for them. I wish it could work so easily for all of us. But even within the infertile community — and this is a key point — there is a huge spectrum of diagnoses that range in severity. There’s also a huge difference between those who were successful on their first attempt, and those who have endured multiple failed cycles with maximum-dosage hormones. Unless your friend’s nephew’s dermatologist tried just as hard for just as long, they are, by comparison, lucky.
  3. “It only takes one.” (Referring to eggs.) This one comforted me very briefly at the beginning, when I first received my premature ovarian failure diagnosis. However, it quickly became clear that I didn’t have even one good egg left, and that I would have to find an egg donor. Even for those going through IVF with their own eggs, it trivializes what is an extremely complex and emotionally taxing process.
  4. “It will happen!” This is one of the most unhelpful comments. It’s also extremely dismissive. Personally, I’ve spent the last ~2 years coming to terms with the fact that it will never happen for me, at least without resorting to egg donation. For some women, it won’t happen ever. Life isn’t fair, and acknowledging that is far more helpful than throwing around fallacious niceties.
  5. “There’s always adoption!” If I had a nickel for every time someone said this to me…we still couldn’t afford adoption. But in all seriousness, this topic deserves its own post at a later date. For now, suffice it to say that this option is no replacement for one’s fertility, and it’s also much more difficult than most people realize.
  6. “I hope it works — my children are my everything.” A colleague of mine actually said this to me at a conference recently. I know they meant well, but it’s basically just rubbing salt in the wound. I get it. Kids are great. But emphasizing how much you love your children is like telling a deaf person how great music is. “It’s so amazing! You’d love it!”
  7. “God has a plan.” I’m not sure where to even start with this one. First off, it’s making quite a big assumption about someone else’s religious beliefs, which may not mirror yours. Secondly, even if there is some big master plan, people are still allowed to be sad when things are royally sucking. I actually do┬áthink things will work out for us eventually, somehow, but that sure as heck doesn’t mean I’m not allowed to rage against the unfairness of the Universe in the meantime.

What to say instead

While comments like those above are obviously said with the desire to impart optimism, the truth is that they often have the opposite effect: they can make those struggling feel unheard or unseen — like they’re making a big deal about nothing. Usually, it’s actually way more helpful to just say “I’m so sorry, that really sucks.” Such a simple confirmation can be (counterintuitively) MORE energizing. That’s because it prompts the person to think: “Other people acknowledge this sucks, but I’m surviving…because I’m strong!”

And speaking of strong, we’ll be driving to Belgium on Wednesday of next week for our 6th attempted embryo transfer. That will catch us up with my friend Elizabeth, who has herself gone through six transfers. As she pointed out to me after our 5th failure, there is actually a small upside┬áto enduring so many attempts: Those around you may have finally gotten a sense of how difficult this process is, and thus how to respond appropriately. “If there’s any silver lining, it’s that by now, people will have stopped saying ‘It will work this time — I can FEEL it!'”

xx

*Apologies for this to my mother, who has been known to excitedly answer the phone with “It’s so great to hear your voice!!!” before I’ve even uttered a word.

**This may have happened to a very distant friend-of-a-friend who shall remain nameless. Yes, she drove to the appointment with a jar of pee. No, she’s not proud.