Infertility Community: A Microcosm of Society Misunderstandings and All

tribeIt has happened again.

‘It’ being a misunderstanding of perspective and tribal affiliation that flares up periodically within the infertility blogosphere. While all who take part in this blogging community identify at some level as ‘infertile’ there are many shades of grey here.

I first experienced this awkwardness nearly eight years ago when I started blogging. A spin through the community blogroll reveals various permutations, categories and identifiers. (I, for one, have long chafed at the labels ‘childfree’ or ‘childless.’ It seems absurd to define who I am using ‘child’ as a modifier. In the context of infertility I think of myself more as a survivor of infertility and fertility treatment trauma.)

In the years since I’ve come to appreciate that this community is in many ways a microcosm of our broader society. We are constantly uncovering new ways to hurt or misinterpret, but hopefully we also can still learn from each other — and forgive. Over time we’ve had healing salons and perspective forums and TweetChats.

So let’s start again today with what we share in common. Across the infertility spectrum, initially anyway, is distress in discovering that our bodies do not perform as they should or as we’ve been socialized to expect. We find ourselves learning to cope with embarrassing invasions to our personal space and lose any sense of control over intensely private sexual functions.

Physically we differ quite a bit. Our reproductive systems — based on biological inhibitors or advancing age — range from needing mild to extraordinary medical intervention.  Some can get pregnant easily but can’t carry to term. Others can’t achieve pregnancy at all.  The range of diagnostics, tests and procedures can be quite onerous for some, more straightforward for others. Among the worst is landing in the catchall ‘unexplained’ category.  Once lost in the maze of doctor visits, it’s not uncommon to see grumbling or comparisons about who undertook what length of treatment or the amount of distress caused by primary or secondary infertility.  (One might even argue that ‘subfertile’ is a better description for those combating lesser complications who succeed with a clear-cut diagnosis and then go on to deliver children.)

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When infertility is particularly complex or prolonged we also have to come to terms with repeated losses. That’s a lot to deal with and it’s not surprising that all of the above drives us into online communities. We arrive seeking support and understanding usually lacking in the ‘fertile’ community. Once here we try to make sense of the assaults on our bodies and emotions. We all have to develop a thick skin and together we work through how to cope while in treatment and beyond.

Some have it harder than others. While all in the infertility blogosphere who struggle to start a family might feel the sucker punch that accompanies high profile pregnancy announcements such as Kate Middleton’s latest that pain trigger comes and goes — perhaps more quickly for those who have a child to cuddle.

As I once wrote on the Invisibleness of infertility: To Pass or Not to Pass when we’re outside the blogosphere and immersed in society we can determine how much of our struggles we’re willing to disclose. Some lock it away permanently; others use the infertility experience as a way to tap into new levels of compassion.

Once parenting talk, though, enters or dominates the social media landscape new friction begins. In the comments from the latest blog discussion, Sarah sums up the challenge:

ALL of us in the IF community endure trauma and shoulder intense challenges, and I begrudge no one that. However, it needs to be said that, in most cases, coming out of this without a child is just harder than coming out of it with one. It’s possible we in the childless/free community may be looking for that acknowledgement from our fellow infertiles turned parents. If so, we’ll have to become much clearer in communicating what we want/need as there is no current protocol.

‘Yes, tell us what you need’ is usually the response along with this comment:

I hate to put it all on you (as a group), but I think you do need to shout louder and more often to be heard, and to tell the rest of us how we can support you. It might not be fair that you have to do that, but that’s what the community needs to grow and to be more supportive of each other.

Unfair. Yep that is what we majored in. I recall years ago a woman who without my knowledge regularly read my blog. She only surfaced one day to thank me for helping her through the worst of her infertility pain — and to announce her pregnancy.

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Is it any wonder that many simply pack up their blog and go home? Here’s the unvarnished truth: In the early days of coping with immense sorrow what we need may, in fact, not be what you want to hear amid your great joy. I think on this awkward dynamic we can all agree that there will always be some amount of friction and hurt feelings — no matter how carefully we tread. How can there not be with the confluence of such emotionally explosive life experiences? It would be lovely to imagine a world where there is some give and take in the accommodating department.

mannersThe lack of protocol between those who go on to parent and those who don’t is not contained only here in the blogosphere. It is the same in offline society. Will that change? Well, I guess it begins with us. But it’s a lopsided two-way street and let’s face it, those of us who didn’t achieve parenthood have a longer road back to a new normal and a higher bar in front of us. Why? Those who succeed go off to post pictures of ultrasounds, nursery plans and the like amid a celebratory environment. Those who reach the end of the road without parenting — due to failed treatment or financial or circumstantial factors — face an added layer of complexity that those parenting after infertility don’t experience for the rest of their lives: societal stigma for being different.

We have been doubly traumatized not only by the repeated failure and losses but by the implication that we “didn’t want it badly enough.” That said — and I speak from experience — it takes quite a while to heal (research puts it at 3-5 years), to boost the stores of compassionate energy and to achieve the emotional fortitude necessary to transform into the benevolent kindly Miss Manners often expected of us on the spot. Alas, we can’t switch off grief and pain with the wave of a magic wand.

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In time we soften, heal and mellow. And we’re helped along when we’re given support and room to do so.

Feeling damaged or different is what brings us into the infertility blogosphere. Some drop in and drop out. Some give more than they receive and vice versa.

At the heart of the matter is this: with the advent of new applications and technology we will stumble into all sorts of new transgressions and bad etiquette — both in and outside the infertility blogosphere. It typically involves oversharing and/or losing sight of the power of our words and images and behavior on others.

This latest conversation is yet another attempt to find middle ground, to find it in our hearts to forgive and to remember our humanity.