#Listen Up: Why Infertility Awareness Is Not Just For People Living With Infertility

When I think of National Infertility Awareness Week (taking place here in the US this year April 23 – 29), it conjures some unexpected images.

What would the LGBTQ movement be without the participation of friends, family members and fellow citizens?

The women’s movement without the support of men?

If you haven’t been personally affected by infertility, you know someone who has been. A friend. A family member. A co-worker. We are people just like everyone else who, as it happens, weren’t dealt a simple hand in the human reproduction department. The level of traumatic loss with which we deal is high, our support systems are more often than not emaciated.

And yet. A perceivable level of broad base support for the social issue of infertility and its related havoc is somehow missing. It is rare I see family and friends supporting, speaking and standing up for those in their life who are dealing with reproductive trauma and loss. One would be hard pressed to find, anywhere in human history, a cause so drenched in the need for a social restructuring that is so ignored by those who are not directly afflicted.

Quite the peculiar state, given that infertility is Anyone’s Disease that can affect Anyone’s Child.

Just as I was about to hit publish on this post it was brought to my attention that National Take Your Kids To Work Day is today here in the US.  A wonderful thing to support, no doubt, except for the oversight of it being scheduled during National Infertility Awareness Week.  One could not craft a more perfect illustration of society’s current level of infertility awareness.

Wanting to give my peers the benefit of the doubt amid my teetering faith, I did some digging.  A 2013 Forbes article had the room to remind people to not “place children in a potentially unsafe environment or lose track of them” (after all, how could anyone figure THAT out on their own) and this year the International Business Times suggested not letting the kids become too involved – “You cannot make them sit in your office and do the work for you so you can get the chance to attend a big management meeting” (no shit, Sherlock).  There was nary a mention of NIAW, such as “And please be mindful of your co-workers who may be struggling with fertility issues as this is also National Infertility Awareness Week”.  Nothin’.

If it really takes a village, then it’s high time we acknowledge and support the WHOLE VILLAGE.

“But who cares about those living with infertility? And why should I be concerned?” one might ask, and not so unreasonably given the close-mouthed culture that surrounds such things.

As someone who came out of four years of trying to conceive, one surgery and ten failed fertility treatments without a child, I’m all too aware of the collective shrug of indifference that shrouds reproductive struggle. I see it as society’s failure, not an individual one.

First, the emotional toll of everything from miscarriages and still births to repeated failed natural and medicated cycles is towering. Socially expected silence and a lack of validation from one’s fellow humans impedes, if not downright stalls, the healing process. Imagine if any other group of trauma survivors in our culture were completely silenced and left to pick up the pieces themselves. THAT never turns out well.

Feeling as though you’re left to fend for yourself and that your fellow humans spared a similar fate don’t care to stand with you on your behalf you does not feel good.

But my concern is not just for those living with infertility. In asserting the one-sided narrative of easily conceived healthy children as acceptable conversation, with a dash of feel-good assisted reproductive miracle baby scenarios thrown in, the greater collective robs itself of its own true story.

Imagine if we, as a human culture, only spoke of physical health while omitting disease from the conversation, or only spoke of sexuality while never acknowledging the existence of sexual assault. What if we stamped out every injurious experience that is life-altering? How would that serve us?

Miscarriages, stillbirths, infertility, involuntary childlessness and now, in this day and age, repeated failed fertility treatments are a bona fide aspect of human reality. Denying their inclusion wipes clean from the human conversation the much needed wisdom and perspectives gleaned from such universal experiences.

If one takes a clear look at the human conversation, the hierarchy is obvious.

Angst over the predictable aspects of parenting (sleepless nights, adolescent strife, empty nests, etc.) – 100% socially acceptable.

Expression of reproductive trauma and loss – Sometimes permissible.

But only if one comes out of it parenting, and wraps their story in shiny “my persistence paid off” paper and ties it up in a “my positive attitude made all the difference” bow. Our culture, after all, is addicted to that baloney.

Tried to have children and couldn’t? 100% socially UNacceptable.

Not only silence, but social conformity is expected. The experiences that altered your life and shook you to the very core? Better take YOUR reality a step back and fade into the wallpaper while you’re at it.

In light of this experience, one can’t help but suspect the archaic connection between one’s ability to reproduce and one’s value as a human still reigns supreme in the subconscious of most people.

My concern with society placing such an exorbitant value on the title of parent (as opposed to good parenting and non-parenthood alike) and the ability to reproduce is that we are valuing ourselves and others on that which we don’t control. And on that which has nothing to do with human worth. I see the title of parent and the ability to reproduce much like winning the lottery – many good deserving people win the lottery, as do those who are not worthy of such abundances.

I was raised an hour north-west of Boston, Massachusetts in the 1970’s and 1980’s unknowingly towards the end of the Red Sox World Series Championship draught. Every spring like clockwork, I’d catch my younger brother’s sweet, pure eyes peering hopefully up from under the brim of his ball cap. “Dad, I can feel it in my bones. I think THIS is the year.”

In my adulthood that didn’t turn out at all the way I envisioned, I now feel in a similar way every spring.

Will this be the year National Infertility Awareness Week stops feeling so unwittingly homogeneous?

Will this be the year friends, family and fellow humans start acting more consistently on our behalf?

Is this the year people will start paying attention to a profit driven fertility industry that shoves patient care to the back burner while viewing its patients mostly as financial transactions? And to the fact few are trying to do anything about it?

Is this the year people living with infertility will be validated instead of being dismissed and minimized?

Is this the year things such as recurrent pregnancy loss, the trauma of repeated failed fertility treatments and involuntary childlessness will be freely included and honored in the human conversation?

Is this the year the contributions of childless society members will be respected as much as those of their parenting counterparts?

These are big questions. What I and many like me do know is that the conversation and compassion surrounding all sides of human reproduction needs to be left much healthier than we found it. Those who come behind us deserve better.

See sister piece Eight Way To Support People Living With Infertility Now

In this age of lightening speed full disclosure and taboo smashing, the seemingly unwavering societal tone deafness towards infertility serves as a constant source of puzzlement.

As I slogged my way through my five rounds of IVF (on the heels of 3 years trying to conceive, one surgery and five failed rounds of IUI) and through the utterly bashing first few years coming out of treatments without children, I consistently observed one thing. Very few were willing to identify with my pain. People failed time and time again to see a piece of themselves in me. The fact that I could have just as easily been them and they easily me (the immunological and genetic issues in our case that created roadblocks to pregnancy in fact CAN happen to anyone) was always ejected from the equation.

An honest perception of infertility’s indiscriminate nature would go a long way in arousing the human consciousness.

And as far as the contributions of family, friends and society towards an inclusive and compassionate human reproduction narrative? I’ll be taking my cue from the “Fenway Faithful” I was surrounded by throughout my childhood. Maybe THIS is the year. The struggles of human reproduction are long overdue for their 2004.

RUSH/THE TREES//There is unrest in the forest/There is trouble with the trees/For the maples want more sunlight/And the oaks ignore their pleas//The trouble with the maples/An they’re quite convinced they’re right/They say the oaks are just too lofty/And they grab up a ll the light/But the oaks can’t help their feelings/For they like the way they’re made/And they wonder why the maples can’t be happy in their shade?//There is trouble in the forest/And the creatures all have fled/As the maples scream ‘oppression!’ and the oaks just shake their heads//So the maples formed a union/And demanded equal rights/’The oaks are just too greedy/We will make them give us light’/Now there’s no more oak oppression/For they passed a noble law/And the trees are all kept equal by hatchet, axe and saw

 

12 thoughts on “#Listen Up: Why Infertility Awareness Is Not Just For People Living With Infertility

  1. I’ve already been reminded by my workplace that it is National Volunteer Week and National Lab Workers Appreciation Week. No sign yet of acknowledging #NIAW.

    • This made me laugh. It’s a good thing we’re not holding our breaths. Interesting to know we rate below volunteers and lab workers. No disrespect to them and the important work they do, however I don’t think having gone through a traumatic life crisis is what makes one part of such groups. Their need for social acceptance and support may not be as dire as oh say OURS, correct me if I’m wrong!

  2. I especially like your point that “infertility is Anyone’s Disease that can affect Anyone’s Child.” This is ignored, and we’re seen to have brought it on ourselves – by waiting to try, or by not trying hard enough, or … whatever …

    Nice post. I’m just sad it had to be written.

    • I find it er, “interesting” when grown ups with children seem perplexed or off-put by my outspokenness on the subject matter. The notion that I and many like me may be making things better for THEIR children one day seems to float right over their heads.

  3. What a wonderfully written post – I’m sad it had to be written also. So many people need to see this to understand how deep and real it is for us. Sadly, things out there don’t seem to change much, but we will keep on hoping together.

    • Fingers crossed and keep speaking!! I’ve noticed most imbibe my experiences as individual, as in “Sarah’s having a particularly hard time with this” instead of the more accurate “If I had had to go through that, I’m sure I’d respond in a similar way.”

  4. I’ve often pondered on why society is so indifferent towards those who’ve been through infertility (and come out the other end without children). I certainly saw it in my own experience. I don’t want to say it’s an individual failing, maybe the prevailing culture is to blame, but individuals that you love do tend to let you down. What usually happens is that friends and family have a limited supply of sympathy at the time (I wouldn’t call it empathy), when you are actually going through treatment, but it quite quickly expires when you stop treatment. It’s a case of, “OK, you’re done now – I’ve got bigger things to worry about like raising my own kids”. Which is FINE, I hasten to add, before anyone laughs at me – I realise that this is life, and I’m not at the centre of anyone’s universe, but it’s a brutal come-down when you’ve walked away with nothing. You are 100% expected to get over it, and never mention it again. I get absolutely NOTHING if I even raise the subject of not having kids with my parent friends and relatives – in their eyes, I’m lucky not to have the daily strife that they have. It remains one of the few areas of ‘medical misfortune’ that it’s socially acceptable to pour scorn and disdain on: I’ve heard (UK) family do it, when talking about friends having IVF. It’s seen as sad and tragic (not in a positive way), and the usual “not with taxpayers’ money!” argument always comes up. I’m just not sure this’ll ever change.
    As for National Take Your Kids To Work Day – what the hell use is that anyway?

    • I wouldn’t call it empathy either!! Yes, we’re in the catch 22 no doubt of not speaking and thus slowing, if not stalling our healing process OR speak and more often than not be judged as “holding on”, being “stuck”, not enjoying the life we do have, having our grief misinterpreted as not viewing ourselves as worthy beyond motherhood and blah blah blah. The fact that there is daily strife in not parenting when you fully expected to be, and that that strife is NOT steeped in the hope and promise that raising children is steeped in seems to escape most people. But I do hope this changes. How, I don’t know! For now we need to keep writing:-)

  5. For some reason this year I completely missed the fact that this week was going on… Ironically it was the week of my final TWW of our sixth round of donor egg IVF that ultimately failed. My husband and I have both made it a point of him telling his employer repeatedly that they need to consider infertility treatment benefits, particularly since they brag about covering gender reassignment surgery which is obviously much more rare than infertility, and this company completely ignores us even when it’s a blatant request for consideration. (Yet they brag about being one of the best employers in the state)

    • No wonder you missed it, I’m sorry to hear of your failed cycles.

      Good for you for speaking up to your husband’s employer!! I’m glad that gender reassignment IS covered – what gets me is that that is covered while treatments for infertility are not. If the fertility industry came less from a profit driven standpoint and more from a medical standpoint (i.e., more intent on diagnosing underlying issues, not overprescribing IVF, etc.), that would help the health insurance cause.

      That said, the lack of medical coverage also points to a deep seeded indifference towards the plight of infertility. Being ignored by an employer on this front does not make you feel very seen or heard, I’m sure.

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