Tuesday, April 22, 2014

Understanding [National Infertility Awareness Week]

Several weeks ago I had an exchange with someone who told me they understood my IVF/infertility experience.  They had no personal experience of infertility.  I'm being as vague as possible here, since it was a personal conversation and I don't want to be an identifying jerk.  This person's experience in no way connected with mine.  They were worried about the possibility of experiencing infertility, but without any experience to really back that up.  It was a fear.  A worry.  A hypothetical shadow.  But in their eyes, we were similar.  Our experiences were somehow equatable.

This is not the first time I've experienced that kind of interaction -- the idea that thinking about what you might do if you found out you and your partner were infertile = the same as my thinking about what I and my partner were going to do when we found out were were dealing with infertility.

I'm not against talking about these things, especially prior to marriage or prior to trying to conceive.  Talking about what you're open to for hypothetical situations down the road is really, really smart.  But unless you know something's up, statistically, you're probably fine and those decisions will forever sit on the Shelf Of Things We Didn't Have To Worry About After All.  Whether you know it or not, you have the privilege of making those decisions in a more sterile room of the mind.  The problem comes in when people equate these hypothetical situations with the real-life-decisions made by those in the trenches, the ones making these decisions when they have much, much more finality, the ones for whom the room in which that decision was made was anything but sterile -- it is fraught when saying "I wouldn't do IVF" really means, for real, no joke, you will not have a child.

The World Health Organization categorizes infertility as a disease.  Treating it like it's a disease is normal for many people.  Many people also choose not to treat it.  This, too, is their choice.  But like any disease, saying categorically *to someone who has the disease you are only worried about hypothetically* that you wouldn't do x or y to treat it...that's hurtful and makes people feel feelings.  The hypothetical decision is not the same type of decision.  It has no outcome.  It has no impact.  It is blissfully free of consequences.  To say Person A understands Person B simply because they're talking about the same subject is misguided.  I mean...would you tell someone choosing whether or not to give their child a cochlear implant that oh, you would never do that or you would totally do that -- when you will never have to face that choice?

You can think about hypotheticals until the cows come home, but at the end of the day, one decision is just an abstract decision, and one decision changes a life.  You can mean it.  You can know thyself and know beyond a shadow of a doubt what you think you'd do.  You can research and come by those decisions with all the logic and thought in the world.  I'll accept that.  But for the love of god, don't tell that to people who aren't living in hypothetical-land.  Because my decision came with thought and logic, too -- but also a lot of cold, hard pain.  And to equate the two is to diminish my pain.  While you might think you're connecting with others, you're really pushing them away, because they know things you don't, even when you think you might.  

Simply put, someone will never understand my experience unless they've been through it, or something a little more equatable.  I will likewise never "understand" the experience of people I know who've experienced tremendously more loss and more years of trying and failure.  I will never understand the experience of someone who's had a failed IVF attempt.  Or several.  Our experiences cannot be equated, although we might share some of the same features here and there.  I've applied to adopt (and been rejected) but that doesn't mean that I am qualified to say I understand what it's like adopting (even if I've read books, and I have read plenty).  I will never understand those experiences, and I will never understand the experiences of those who got a baby the first attempt and were jarred by that, or surprised by parenthood entirely.  

And here's the important thing about all that: It's okay.

I'm a firm believer that we can be good friends to each other not by "understanding" everything the other person is going through -- because that's just impossible -- but by attempting to be good listeners and good supporters.  People cannot expect authentic empathy from everyone -- at some level, sometimes you just have to acknowledge that you're never going to be on the same plane in terms of actual lived experiential understanding.  We can try to bridge the gaps in understanding, and we can try to learn.  But I don't expect people who haven't been down my particular road to understand the way it felt to turn this way or that on that road.  I think to expect that is expecting more than is reasonable out of a human being.  It's unfair of me to expect that.

So much of this boils down to the way in which we seem to form friendships via mirroring.  We mirror each other and while this often helps break the ice and forms tentative bonds through shared connections, it can go very wrong when the mirroring ends up involving something one person decidedly doesn't think the other person actually shares in common with them.

I think it's more beneficial to ask questions like "How are you feeling?" and saying things like "I don't know how you're feeling, but I'm here for you for whatever you need" than trying to create a shared experience out of something that is not shared.  I'm no saint, I've been the jerk who said she "got it" before, too.  I'm trying to change that because I've been on the shitty butt end of this a lot since going through infertility.  I don't expect my friends to understand on the it-felt-exactly-this way sort of way what my husband and I have been through, and I think it's okay that we don't share the experiences our friends are having right now, too.  We may not understand at an experiential level, but we can be there anyway as supportive friends and human beings cheering them on and holding out a hand and offering to bring over some egg rolls or something.  That's part of being human -- acknowledging that you don't know everything, can't always know what another person is feeling, can't always "experience" their experience on their level.  You can't always walk in someone else's shoes, and just thinking about it simply doesn't bridge the gap in a lot of cases.  Even if you research the crap out of those shoes.

Expecting people to be mind-readers and experience-twins in order to maintain or form connections is just a recipe for short-lived friendships.  Everyone's life is going to involve stuff that other people don't "get" and experience, and I think it's far more important to be there on the road saying "Hey, that looks really hard, can I help you carry that load somehow?" than to say "Oh man, I've totally been on that path myself, it was really hard" if I haven't technically been on that path.

This week is National Infertility Awareness Week.  I'm writing this because I don't think you should have to "get it" when it comes to the experience of infertility.

You don't have to "get" it.  You just have to show up.  And maybe bring a 6-pack.  And some egg rolls.  I will if you will.


  1. hello! haven't commented in ages but thought this was great and I agree/empathize and not at all in a hypothetical way :) I've had some really terrible experiences with this, the number of people who have in an off-hand way said 'oh we could never have used a donor' when it's not something they were facing... let alone 'I would never do IVF' which feels like a ridiculous thing to say when you have no idea if its your reality or not. anyhow, thanks for putting it so well!

    1. Hey there! I hope all is going well with you and yours. I miss your blog, but totally understand that you've probably been a bit busy! :)

      It's like on one hand, I don't want to discount people's feelings about what they think their limits are when it comes to medical intervention. On the other hand though, so often it's this instantaneous knee-jerk answer they give, ohicouldn't, ohiwouldn't, that it's hard to take it seriously. For those people who think about it long and hard and decide their limits in that sterile space of not-knowing...I want to grant them the benefit of the doubt, but then I think back to the agony of choices we had to make, and I think, no. No, these things, while the same subject-wise, are not the same. We are not making the same choices, even if we think we are!

    2. I kind of miss blogging too... but can't really think of what to say or what time to say it in. It's not really because 'oh holy heck having twins is so busy' (although that too) but more some weird mental block where it doesn't feel like the same space any more. But I really miss the community-building part of it, like getting to 'know' people like your good self! Still reading, just not really commenting much.
      Anyhow, I think you'll probably remember this weird I'm-not-sure-what-to-call-it - fight? tense discussion? - that I had with a blogger right at the start of my pregnancy that I think you were part of too. Basically you've said right here all the things I couldn't really figure out how to say then, which is that I respect when someone really does put a lot of thought into thinking through how they would react to a hard decision (as you do, and differentiate between those people and the knee-jerk people who are just, well, jerky). Yet I feel really let down when they aren't able to recognize how different that could-be situation is from my yep-definitely situation. I just need a little qualifier like 'I don't think I'd choose X but I can't really know now' - too much to ask for?

    3. I do remember it. It sat with me a long time after it was over, in part because I didn't think ill of the blogger at all, but I was pretty upset. I couldn't quite articulate *why* though, without sounding like I was being dismissive. But, I also felt like the infertility label was being...misapplied when used to describe a decision made about infertility by someone who hadn't experienced it. I ended up stepping away for a good while because my mind dwelling on the million ways I could continue the conversation was unhealthy for me at that point.

      That said, while it deeply upset me, I think it upset the blogger too. It was unpleasant all around, really. :(

  2. Interestingly, my engineer husband refused to discuss hypothetical before we started to try to conceive. His answer to all my fretting was "we'll deal with that if we need to deal with that, and not before". (He may be the sane one of the relationship...)

    I understand how someone can get a bit crazy before TTC, and I won't lie that the start made me a bit crazy too - especially after I miscarried the very first month we started trying and my mind went a bit ... nutty. But only an asshole would pretend that a couple of months of worrying on my end equates to someone else's hardcore fertility issues.

    At any rate, just wanted to say I like what you've said here and elsewhere about this. You're remarkably evenhanded about it, in a way which I can imagine might be hard at times.

    1. I really don't care what treatment wills/will nots people come up with, it's just when they start equating the decisions they've made without needing to with my own that I get...well, a little stabby. Know thyself, have a good idea of what you think you'd do (regardless of my own opinion that, hey, if that's what you think now, sure...) -- but for the love of all that's holy, these things are not the same! I do try to reign in my stabs though. I feel like this just comes up *so often* for some reason that I've had this post sitting in my queue since the night the initial conversation occurred weeks ago.

      Thanks. I guess what I mean to say is, I try.

  3. I agree. The words are so similar and yet there's such a big difference between a blithe "oh, I *know* - it's so hard!" and a "that sucks - I can only imagine how hard that must be for you." And I think that goes for so many things. To a friend who is experiencing infertility, disability, depression, racism, whatever it might don't have to pretend you *know* what it's like in order to be there for them. Shared experience can be a bond and a source of comfort and reassurance, but *pretense* of shared experience is only diminishing and isolating.

    1. Yeah, it's the pretense that bugs me really. If it hadn't been couched to me in such an obvious these-are-only-fears-I'm-having way, I think I would have handled it better internally because hey, people have fears, that's valid. But the connecting of those fears to my experience is what threw me for a loop.

  4. This is so true, and not just for infertility (of which I have no personal experience) but for every difficult or emotional thing in life. Is there a less helpful sentence than "I know exactly how you feel"? Because, unless you actually ARE me, in which case I should probably stop talking to myself, you cannot possibly know how I feel. I know people are trying to be nice or reassuring or whatever, but I find it has the opposite effect.

    That said, I'm not very good at knowing what to say in these situations. "That must be so hard," or "that must be really difficult" is about as good as I've got. Also, I'm British, so "would you like a cup of tea?" is pretty effective.

    1. Tea seems as good a reaction as any. *hugs*

  5. do you not think that someone commenting on the hypothetical infertility she may or may not experience is JUST AS insensitive as you telling a fictional character "fuck you" (whether politely or no?) because she was actually dealing with the experience of being a mother, which to you was just a hypothetical?

    1. I think they're different things. What I wrote in that article a while back was the following: "IVF is a relatively short procedure (footnote 12) but the longer-lasting stuff…that anger we feel, like when Lily on How I Met Your Mother said she didn’t like being a mom and wanted to run away (footnote 13)…that’s taking some time to process. I don’t really have any advice for that, but I’ve read a lot of books. As the wonderful Lamott puts it in her book Stitches: A Handbook on Meaning, Hope and Repair, “I wish there were shortcuts to wisdom and self-knowledge: cuter abysses or three-day-spa wilderness experiences. Sadly it doesn’t work that way. I so resent this.” Yup.

      12. About six weeks for me.
      13. “Fuck you,” we said politely to Lily. ↩"

      I was referencing anger, and to me, that was a signal that this was a feeling *I did not want to be feeling* as a reaction to something. That I was processing it and acknowledging that feeling was, to me, a way of saying, clearly I have some issues that I need to resolve. It was never my intention to say that feeling anger and bitterness are things I should just embrace, because...that's just unpleasant. I'm sorry if the way I phrased it has been bothering you, but it was meant as a jab at my own failings in relation to my feelings after IVF rather than a jab at motherhood.

      I should point out, though, that I *do* think they're different. Lily is, as you point out, a fictional character. That I felt that anger towards her in a flash of "fuck you" is largely because of that -- we sat down to watch some mindless entertainment, and was smacked in the face with someone complaining about that which we longed for and worked for. Had Lily been a real live person expressing a real live emotion about a real live situation to me, my reaction would have been entirely different. I don't think I would have said, "I know how you feel" to that either, but I certainly wouldn't tell them "fuck you." I said it to the character because the character's job was to entertain me, and I felt annoyed that my entertainment turned a corner into feel-bad-town. Was my reaction indicative of shortcomings on my part? Well sure. I'm no saint. bringing it up was in self-deprecation and an acknowledgement of my needing to work through that, rather than crowing over it.

      My apologies if that's been bothering you for a while, anon. My intentions were certainly not of the "fuck you" variety to people who struggle with motherhood.

  6. I do have to laugh - I remember that episode of HIMYM because my reaction was the exact opposite - I burst in to tears of relief. I was over the PPD by then, but fuck the first year of parenting, no matter how badly wanted, can be hard. And it's not really a message you get in the larger culture. I mean, I love my kid so much I want to eat her some days, but just this weekend we were driving at night sans baby and it was alllll I could do to not make David keep going, drive right past the inlaws and just ... keep driving. For a couple of hours or days. I mean, I'd come back, I love that kid. But sometimes it's hard.

    Your reaction totally makes sense, and on your side of the fence I probably also would have told Lily to go fuck herself, but on my side of the fence, it was nice to hear someone (not a Gomi-esque blogger) admit it.

    Now, if you want to talk about the episode where Marshall's dad dies as they are trying to conceive? That's the one that felt like I was getting punched with a truck, as I was still mourning my dad's death and trying to conceive and realizing that my daddy would never meet my baby... That one makes me tear up even *thinking* about it. Stupid tv show.

    1. Yeah, I feel like...feeling hardcore emotions towards TV shows is kind of its own category of feeling. These are situations which are written specifically to make us feel things, and whether we feel what we're being told to feel, or something else entirely, is kind of different from encountering things in real life. I absolutely don't doubt that the first year is hard. I trust people are telling the truth when they say that it is. The show just caught me at a bad time and I was a shit about it because..well, it's a TV show. If anything, I think the shittier thing of me was writing that I was mad in a way that could be interpreted as a broader 'fuck you' than it really was.

      The counting-down to Marshall's dad's death felt like they were playing with the audience in the shittiest way.

      There was also the time when they toyed with showing Robin's future kids, only to have her discover she couldn't have them as they faded from the screen. That sitting-in-the-snow scene was fucking brutal.

      Such a good show. Until that FUCKING SERIES FINALE wtf wtf wtf.