The Nuanced Grief of Infertility

On losing something I wasn’t sure I wanted

Rachel Langer
Nov 25, 2018 · 9 min read
Image: jklr/iStock/Getty Images Plus

It’s been 82 days since I had my uterus and all its appendages removed in what my surgeon and I have affectionately dubbed “not your grandma’s hysterectomy.”

Once removed, my fallopian tubes and uterus were found to be so ravaged by endometriosis that my specialist was confident I never would have naturally conceived a child. The disease had also compromised my bowel to the point where we required a second surgeon to shave off layers of it and stitch it up. They even prepped me beforehand for a possible ostomy. I didn’t need this, but they had to leave a little of the disease inside me, just to keep things spicy.

Of course, we knew all of this definitively only after they’d completed the surgery, which may be why before they would consent to operate, they made me see a counselor and write a letter proclaiming my certainty that I didn’t want kids and would not regret my decision. They couldn’t know that my chances to procreate were so minute without going in, so instead, they needed to know that I was completely okay with the fact that I’d never bear a child of my own. And in some ways, I was okay with it.

I’ve written about this before, but I’ll sum up. Having children was always on the periphery for us. Something I assumed I would do, because I grew up on the prairies where marriage, house, and offspring is the natural way of things (although not necessarily in that order). My partner and I talked about it often, although it usually went something like this: You ready? Nope, you? Definitely not. Okay, so maybe revisit in a year? Sounds good.

It wasn’t just that we had chosen careers that even the best parents admit are nearly impossible to balance with family life; it was also that we weren’t sure we were really kid people. I often cringe when we’re seated near the family section while eating out, and I generally avoid spending time with my friends’ children or kids with whom I don’t have a familial connection (I do admit to totally adoring my nephews and nieces). We just had never had that thing that people talk about, where they are filled with a deep longing for a baby. It never seemed like the right time, and as the years continued to pass I wasn’t sure I could imagine ever feeling any different.

The problem with having to write a letter stating my absolute acceptance of impending sterility was knowing that if I hedged at all, I may not have been allowed to go through with it.

I can feel you out there, with your responses prepped and ready, so let me jump in before you blurt them out. There’s no right time to have kids. You’ll love them when they’re your own. There are many different kinds of parents. It’s the most fulfilling thing you’ll ever do. If you’re on the fence, just go for it — you may regret it if you don’t.

The frequency with which these statements are made could lead one to believe that they are hard-and-fast truths, although I seldom believe in a constant state of universal truth.

It seems to me that a more accurate truth is the perpetual flux between the good moments that these statements are born of, and the less-good moments that foster the exhaustion, frustration, and all-around stress that accompany parenthood. I believe you can simultaneously contain absolute and boundless love for your children while still wishing for more personal time, more sleep, and less responsibility. But what do I know? I’m the childless, barren asshole making statements from her computer keyboard.

The problem with having to write a letter stating my absolute acceptance of impending sterility was knowing that if I hedged at all, I may not have been allowed to go through with it. I have a hard time understanding why it’s possible for me to know that the surgery was the right decision while still acknowledging that I may someday feel some regret. It was an acceptable margin of risk for me, although I guess it wasn’t for the Canadian medical system, which is litigious in legendary measure. It needed to be black and white, which meant reducing it down to an impossible point of certainty.

I was told I was considered “a high candidate for regret” primarily because of my age and the fact that we didn’t already have a child of our own. I remember being told that if I cried during an appointment, we wouldn’t be able to discuss the prospect of a hysterectomy because it reinforced the narrative that I wasn’t certain or emotionally on top of things enough to make this kind of choice. When I broke down in an appointment after it was agreed that I needed surgery of some kind, my partner jumped in to vehemently remind the doctor that tears of relief over the prospect of not being in such pain anymore were just as valid an expression as tears of regret.

So I wrote the letter. I reduced this complicated and tricky concept to a missive on how I regretted being in agony every day and not being able to live my life to the fullest. On how I’d never wanted to be a mother.

I told the truth. I lied.

Since the surgery, I’ve noticed a new narrative emerging. So, did it work? Are you fixed? Have you noticed a significant reduction in your pain? You must be so relieved it’s over. You finally got what you wanted! Did I? I never actually wanted a hysterectomy. A hysterectomy isn’t going to cure me. I got the only version of relief available to me. And there’s no fixed point of when I’m supposed to be healed from this surgery (although I can tell you, I thought it would be a lot faster than it is).

I can see where the rub is. I have said the words “I want a hysterectomy” many times. But they have always been in context. The wanting of it predicated on me not wanting to continue to lie on the floor in pain every day. However, in the larger, more holistic sense, did I actually want to go through major surgery as a last-ditch treatment option for a debilitating condition that has no cure? Absolutely not. It was just the best shitty option in a long line of shitty options. Now that it’s over, I feel this constant pressure to define whether it was worth it. To examine whether the end justified the means.

Putting aside that I won’t be able to qualify that while I’m still healing (which could take an entire year, until the craters they left within have had a chance to repair themselves from the bottom up), how could I ever actually know it was worth it? I can speculate, but I’ll never empirically know how different life would have been if I hadn’t done it.

Attempting to guess seems like folly. I can’t really blame people for wanting closure, or a concrete metric. It’s mostly born out of caring, and hope that better things are in store for me. The result of being so open about this journey is that people inevitably give a crap about whether I get a happy ending. It’s human nature. They’ve watched me go through hell and they want to know that there’s an upshot. That I’ll be okay.

But the truth is, I don’t want to be okay. I’m angry, and I want to stay angry. I need to be angry to keep fighting the injustice of this disease and to be an advocate for women’s health. I want to know that the women coming up behind me won’t have to make the choices I did. That there will be better treatment options for the next set of women/nonbinary people and trans men dealing with these issues. That maybe someday we won’t have to look at a Cialis ad and wonder why we can fix male erectile dysfunction but we don’t have enough funding for the 1 in 10 of us stuck in this dumpster fire of daily agony and infertility.

The result of these mingling griefs is a complicated relationship with the motherhood narrative — something that is still wildly pervasive.

Coupled with that anger is a complicated puttanesca of emotions. On any given day I experience some or all of the following: Relief that my condition has been treated and hopefully won’t get any worse (no guarantees, or course; see lack of research) and that my agonizing days of decision-making are over. Sadness that I have lost out on 15(ish) future years of reproductive health (plus the 15 past years of crap) and now have to be on hormone-replacement therapy to keep my body correlated to my age and stage in life.

Occasional crashing waves of despair that I cannot ever be a mother. That it’s physically impossible for me to see my features combined with Derek’s in the face of a tiny human, or know which parts of my personality they may have inherited, and how much of his incredible heart they would have carried forward.

Guilt that I am mourning something I’m fairly certain I would not have chosen. Fear that I’ve irrevocably changed my body in ways I may not yet understand. Joy when I realize I’m walking the seawall on a day with little to no pain. Anxiety when I have a high-pain day, wondering if all of it was just a big distraction and actually changed nothing over the long run.

And, finally, sheer exhaustion from talking about it, analyzing it, writing about it, and thinking about it all the bloody time.

Explaining this nuanced grief to people is tough. How can I conceptualize it to others when I barely understand it myself? I knew it would be complicated before it happened, but it really hit home for me shortly after the surgery, when I found myself weeping over an Always commercial. I was set off by that insulting blue liquid that fools no one, and I understood I would never again require what they were selling.

I realized I was grieving two separate things. First, the loss of a normal experience. I should have been able to menstruate until I hit menopause and my body naturally stopped. I should still be able to make a joke about being kicked in the ovaries without a twinge of guilt reminding me that I no longer have those and am now misrepresenting myself, even though it’s just a dumb metaphor. Second, that I would never get to say “We chose not to have kids” or “Yes, after all this time we finally decided to have kids.” Would we have? Who knows? Who cares? That was always Schrödinger’s cat. Only now the box is open and the cat is unequivocally dead, and I have no choice but to accept it.

The result of these mingling griefs is a complicated relationship with the motherhood narrative — something that is still wildly pervasive. I can’t watch shows centered around parents. I change the channel when a commercial for a pregnancy test comes on. I will 100 percent decline an invitation to your baby shower. (Settle down: I’ll send a gift. Probably.)

This sneaky, subtle, nuanced grief is an art.

There are strange triggers to this grief that hit me unexpectedly and ultimately can’t be controlled. As a TV writer, I find myself actively shying away from pregnancy and motherhood narratives. It’s not a quality I’m comfortable with. I don’t want to close myself off to something just because I’m not going to do it; that’s against my very nature as a writer. I don’t want any lingering bitterness to creep in and steal my ability to engage in the joy of others, or disconnect me from a natural and wonderful part of life. But I am at a loss as to how I should navigate that while still giving myself the space to heal.

Maybe while things are so fresh and raw there’s value in not poking at the wound. Maybe it’s okay to take it slow and give myself the space to process it. Only time will tell if I will be able to walk the fine line between allowing myself to heal and building a protective bubble in which to hide myself away.

This sneaky, subtle, nuanced grief is an art. A strange, aggressive Impressionist painting that seems to change with the light and grow more layered with each new viewing. I can only hope that someday I’ll look at it and realize that I finally know what it’s been trying to show me.

Rachel Langer

Written by

Screenwriter. Canadian. Wordsmith for The Order, The Bletchley Circle San Francisco, Ghost Wars, and This Life. Loud about endometriosis and women’s health.

Rachel Langer

Written by

Screenwriter. Canadian. Wordsmith for The Order, The Bletchley Circle San Francisco, Ghost Wars, and This Life. Loud about endometriosis and women’s health.

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