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.

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23 thoughts on “Infertility Community: A Microcosm of Society Misunderstandings and All

  1. Well said Pamela. I commented on one of the blogposts, noting that maybe we should just think about what we say, when and where we say it. Diplomacy.

    I have to say I love this line: “Unfair. Yep that is what we majored in.” You said it, sister.

    1. Pamela Tsigdinos

      Dear Mali: Your steady head and mastery in diplomacy has kept the dialogue open across the infertility blogosphere over the years when I and others struggled to be heard. You are a role model that has shaped and guided many — and for that I am eternally grateful.

  2. I heard about this latest community eruption just today. It seems that the community periodically revisits this — how to respect the rights of an individual while trying to meet the needs of the group. Perhaps this is a common struggle in most human groups. And because it has never been settled, perhaps there is not exactly a universal solution other than a series of eruptions.

    Youch: “She only surfaced one day to thank me for helping her through the worst of her infertility pain — and to announce her pregnancy.”

    1. Pamela Tsigdinos

      As the long-timers in this community, Lori, we’ve seen and heard enough to write volumes — and we have! So glad to have had your friendship and grace these many years!

  3. Nicely put! Unfortunately, I agree with you about the need for speaking up, especially when one is not parenting after infertility. There are too many misconceptions and willful misunderstandings. That can be changed, but it is a battle. It should be an unnecessary one, but society needs to learn.

    And she announced her pregnancy to you?!?!? Oh lord, not a brilliant move. Very sorry you had to endure that one. But am continually thankful for you and what you bring to this community.

    1. Pamela Tsigdinos

      As Sarah said, it’s only when we feel we’re in a supportive environment that speaking up when we feel vulnerable comes more naturally. Your compassion has always shown through, Cristy, and for that I commend you.

  4. I think that when confronted with a highly charged situation that it is imperative that we take a step back, calm down, and think about what we want to say before we say it. The less eloquent way to say it is to run things through your “shut-up filter” before saying them. Words have the potential to inflict a tremendous amount of pain, and nobody deserves that, particularly not at a time that should be happy for them.

    I also wrote some variation of this on Mali’s blog, but it’s worth saying again: If we can support one another during the the depths of our grief, we should be able to support them (or at least not hurt them) during the happy times as well. I haven’t been around long so this is the first time I’m witnessing drama in the blogosphere and it disappoints me. I think I’ll just stick to my little niche in the blogosphere and continue to not venture out to the wider infertility blog community.

    “She only surfaced one day to thank me for helping her through the worst of her infertility pain — and to announce her pregnancy.” I want to punch this woman in the throat. (FYI-this is the version that made it through my shut-up filter)

    1. Pamela Tsigdinos

      Oh, yes, Kinsey, the ability to step back and calm down has saved me from many regrettable comments. It’s not an easy behavior to learn but it has served me well.

    2. A.

      Thank you for saying this: “If we can support one another during the the depths of our grief, we should be able to support them (or at least not hurt them) during the happy times as well.” Anyone who has endured infertility for any stretch of time while also living in the world has been forced to find the shades of gray in coping with the fertile majority, made up of the sisters, friends, and cousins we hold most dear. Why should an advocate with whom we once stood arm-in-arm suddenly become the target of vitriol simply because she lucked out? We’re allies so long as you don’t get what I want? No, that kind of conditional support, simply put, is hypocrisy.

      1. You’re welcome. It’s nice to hear about someone kicking infertility’s ass on occasion, but from where I’m sitting it’s also really difficult, so I have to limit my exposure as a protective mechanism. This is why I rarely venture out of my little niche in the blogososphere. I can simultaneously be happy for a person while being overwhelmingly sad for myself. If I’m brutally honest with myself and everyone else, right now I can only do the part of that quote that is in parentheses (regardless of how genuinely happy that I may be for the person). I’m not yet to the point where I can be a vocal supporter of someone who is pregnant, regardless of their journey to get to that point, but I can support them by keeping my mouth shut and not attacking them. This is the best of me I can offer at this point of my life. Selfish? Maybe. Probably. But in addition to not hurting others I also need to make sure I don’t hurt myself.

        I hope this makes some sense….

        1. A.

          Of course that makes sense! I hope you know from my comments about dealing with your sisters that I support what a therapist once suggested to me – “a loving boundary.” We can care about people and not hurt them while also gifting ourselves some protective friendly distance.

  5. Thank you so much for your blogpost. Matchpoint !
    I don´t know any interna of the US or UK infertility community – but it seems to be exactly the same (shit) as in german communities and blogosphere. At the end I am not very optimistic that things really will change one day. Neither in RL nor in VL. But hope dies last :-)
    Happy new year from Germany. xoxo, Isa

    1. Pamela Tsigdinos

      Happy New Year to you, too, Isa! It’s interesting to see that these behaviors cut across all languages. Perhaps we can develop a collective new consciousness that transcends and applies universally. xo

  6. Aaaaahhhhh, this was so grounding to read. Still entrenched in my first year of “ending treatments and not pursuing parenting via other channels” bedlam, your perspective is so welcome and needed. Feeling alienated in a community that I initially came to for support is something I frequently struggle with.

    I’ve had many thoughts on this since it came up. One I’d like to share is that when people who were able to acquire children via IVF comment on my blog, the acknowledgements of “I have never walked in your shoes” and “I can’t imagine what you go through” are much appreciated and go a long way in the right direction. But, I can only speak for myself. I wonder how others in a similar position feel?

    Oh, and I gave you a standing ovation for this Pamela. Yep, all by myself in my house I did:

    “….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 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.

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

    THANK! YOU!

    1. Pamela Tsigdinos

      So very satisfying to hear new strong voices coming into the conversation! Your perspective is much appreciated…

  7. Great article Pamela, & some fantastic comments.
    I agree with you completely that there’s a lack of protocol between those who go on to parent and those who don’t both online and offline. There’s a massive empathy deficit in society & it seems that no one knows how to react to loss. One of the best reactions I had was ‘I don’t know what to say’ and people seem to prefer to avoid the subject altogether than even say that.
    As you say I guess it does begin with us & perhaps we need to take more responsibility for that.
    Also I agree with you on the term childless but it’s too common on the web!
    Thank you!

    1. Pamela Tsigdinos

      Many thanks, Lesley, for all you do to raise awareness, to help those in their healing and to broaden the dialogue.

  8. Thanks for this great post, Pamela. It’s sad that these sort of divisive incidents seem to keep rearing their ugly heads in the blogosphere every now & then, but human nature being what it is, I guess it’s bound to happen. I think it helps for those of us who have been around for awhile to remind people that “this too shall pass.” Also tiring that those of us living without children need to keep asserting our place in this community — but it’s getting easier with strong voices like yours and the ongoing addition of wonderful new voices like Sarah’s. :)

    By the way — my anti-spam word is “kindness.” I think that’s highly appropriate for this post. :)

  9. Well, looks like I missed another dust-up! Thanks for the recap (I’ve gone over to comment on the post about the Twitter business as well). I’ve said this before, but it bears repeating: your voice and example have been such a blessing for me as I’ve gone through this journey. I’m going on three years after ending treatment for good, and I know a lot has changed, and a lot of things are possible for me now that once simply were not. (And that new flexibility seems to come at just the right time in many ways – thank God.) On the other hand, as I marvel at my new healing (“Look! Wings!”) I recognize my limitations. There are things that still hurt. There are things that I wasn’t expecting to be hard, and they still hurt. There are things that I am waiting for, trying not to be surprised by, because I know how much they will hurt. The three-to-five-year estimate (I must have read that before, in Dr. Marni’s dissertation, right? But I had forgotten) gives me grounding, and hope. Thank you for mentioning it.

  10. Before I started connecting with other ALI bloggers, I was very wary of this. I had been browsing through many different blogs in the ALI spectrum and at that time I found the Pain Olympics. As I’ve never been pregnant, a part of me felt worried that others may think I belonged “less” than other people who had more losses. Plus when it was clear that I was going down the other path, I had the same worry considering the fact that I’m still far away from my menopause.

    I think this was what made me become very careful in blog-hopping. Only after I decided that we were going on the other direction did I start becoming more active in looking for those who belonged to that category. As you said in this post, we need all the help we can get and it takes us longer time than others to redefine ourselves.

    Love what you said about forgiving and remembering our humanity. Well said, Pamela.

  11. I am just now catching up on the drama, and the one thing that I keep thinking about is the lack of empathy. If we considered others before choosing our words, there would be less issues. I have to say I was horrified at some of the comments and I am glad to have read something that is so diplomatic and caring. Thank you

  12. […] our modern society we invest a lot of time creating labels, categories and rituals to define ourselves and others. […]

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