NIAW–The missing voice

30 Apr

Welp it’s the end of National Infertility Awareness Week, a week that Resolve (The National Infertility Association) designates each year to raise awareness about the challenges and realities of infertility.


So I started a blog at the beginning of the week and it turned into two, and then Eric posted his blog, and it basically talked about all the things that I had been writing about.  And so I tried to think about how to revise mine and I spent the week watching other people’s posts.  And reading. And talking with Eric.  And thinking.


See I had noticed something about all those posts I read (to be fair…I couldn’t keep up with all of them…so what follows is just my own interpretation of what I did look at, which was any link I saw in my FB feed if I had a spare minute to read someone’s story).  I noticed a missing voice.  The missing voice was the voice of the couples choosing to forego medical treatments and adoption and just live childfree as a resolution to their infertility.  I found it interesting, since Resolve does list childfree living as a resolution.  And yet that voice is missing this week–almost like we don’t want to talk about it OR that it’s a shameful choice OR that it’s the last resort when nothing else works–not really a choice at all.


And so then I tried to think about why that might be.  And at first I was like well that’s just a testament to how good medicine is. Most people get pregnant…most people have their lucky cycle…they get what we all (in the infertility community) want.  Except that many of the stories I’ve read this week are about people who haven’t had any luck yet, but who are continuing treatment–after years of IUIs, IVFs, donor eggs and sperm.  They talk about the years of heartbreak, the costly treatments, the devastation, the pain…and then about the trepidatious hope that maybe, just maybe, something is going to work someday.  There are plenty of people in the infertility community who have clearly not had their lucky cycle yet.


So then I realized it’s probably just because no one wants to hear about the poor “losers” who get “stuck” childfree.  Because we want to encourage hope and one-more-try and perseverance.


And then I got really annoyed.


Because in all the myths about infertility, in all the articles clarifying misconceptions, there is little mention of how bad the odds actually are.  No one ever wants to talk about the fact that IVF doesn’t always work–I think people (who haven’t gone through it) actually believe that if you do IVF, you are guaranteed a baby.  And REALLY no one ever wants to talk about the reality that of the women that will seek treatment for their infertility, only 65% will eventually carry a baby to term. 65%   Those are some really shitty odds.  I wrote YEARS ago about how I feel about gambling, how the choice to seek and continue fertility treatments is ultimately just a gamble.  But I don’t think even then I realized what a gamble it is.


And at some point, you have to start asking when you stop.  Today we were talking about this.  About how I can see how people who have gambling problems get started–because you lose a little money…so you try again…but you lose again…so you put some more money down…and then eventually you are so deep that you feel like you can’t quit, because you’ve already invested so much money that you can’t keep losing.  Your winning hand HAS to be coming soon.  And that’s infertility.  You invest so much time and money and emotion…and you lose…and lose…and lose…and at some point you are in too deep to quit.
And I feel a little bit like that’s where we are now.  We’ve done a lot over the past 7 years and none of it has worked, none of it has even come close to working.  Every time we take a break from treatments, people act like we must not want kids, they tell us to just adopt, to just go do IVF, to relax because it’ll happen eventually.  And every time I think about what we’ve already invested and get sucked back into the whole shitty process again.  But this time, this break, has been different.  I’ve thought about how much longer we can possibly do this…how much longer we WANT to do this roller coaster.  The people saying these things, trying to be encouraging…they just don’t get how hard it is.


So when I’ve mentioned now that I’m not sure we will ever do medical treatments again, people question it.  They say “well if you really wanted kids, you would …xyz…” and “you must never have really wanted it” and “don’t give up hope.” It makes me feel sad and guilty, like we’re being judged unfairly for “quitting” or that we are letting people down by choosing to live my life without fear or doctors or unrealistic hopes.


I have spent years feeling every negative emotion possible.  Things I’d never really felt before–I was a generally happy person.  I suppose I always have been, even during these past 7 years.  But I was also frustrated and sad and angry because everyone else was getting babies.  Everyone except us.  And then I would tell myself to stop being dramatic, that not everyone gets babies. Then I’d think about who we know that wanted a kid that still didn’t have one.  I couldn’t think of any couples who were trying when we started trying who don’t have a kid–many have more than one.  People who didn’t even know each other when we started trying to have kids.  Everyone who wants a baby seems to end up with one.  And that is so exciting and wonderful for them, but it is heartbreakingly, devastatingly sad for us.


So I was angry for a long time. But then I realized we didn’t have to keep going with the same horrible cycles with the doctors.  We didn’t have to keep feeling the frustration of trying so hard for something with absolutely no results ever after 7 years.  I started accepting that it might not happen for us. And I realized, when I thought about it, that while never having kids hurts, that reality, it is also ok.  We are going to be ok, no matter what the outcome of all of this.  And when I just accepted the childfree-ness as a possibility, I felt so much better.


That doesn’t mean I feel good about it.  I don’t think it will never not hurt (yeaaaahhhh double negatives).  We are not totally decided about our future medical treatments.  But even if we decided never to see another doctor for this, I don’t know if it will ever stop hurting.  And it only makes things worse to hear some of the really horrible things people have said to us over the years.  I struggle to get over the people who have said things like “you need to be happy for everyone else and stop being so sad” or “just stay positive because it fucks up your hormones” or “relax and it will happen” or “you just aren’t meant to be a mom there must be another plan for you.”


Listen up!! Stop saying these things.  Staying positive and being happy and relaxing–those things don’t cure infertility, so stop perpetuating the myth that changing your mindset will get you pregnant.  It’s just not true.  Infertility is a medical condition, not a mental one. I have seen a number of doctors and take my medical advice from them.  Stop trying to fix the pain by blathering platitudes about a greater plan that just make me feel worse because I should just accept the plan.  I get that you are uncomfortable and want to try to fix things because then you can get out of being uncomfortable.  But these statements…they don’t make me feel better, fix anything, or make the situation any less uncomfortable for anyone.  We aren’t here to fix each other–we’re here to be there for each other while everyone fixes their own problems.


Listen up! Being childfree is a resolution to infertility.  And it needs to be treated as such.  Some people won’t ever have kids.  They will choose to stop treatments. They will decide that the process, the waiting, the financials of adoption are not a route they wish to pursue. They will be fine. Life will go on.  It will still hurt.  A lot.  All the time.  And the best thing you can do is drop the judge-y one liners and questions, allow room and time to grieve, understand that being around babies and kids can be really fucking hard, even if you have made the choice to be childfree, and just say something like, “I’m sorry you are going through this.”


There seems to be a lack of resources for living childfree not by choice.  Honestly I think it’s because people wrongly think that this reality, this resolution is sad and not hopeful enough. But I personally think it is hopeful–it is far more hopeful to believe that without a baby we will be happy and have fulfilling lives than it is to pine away for another 7 years for something that may never be.  To live in the here and now and not be constantly waiting and trying for something that may or may not be in the future. And that is why this resolution, the one where you stop treatments and waiting and hoping for what could be, it should be talked about more because it’s doing a disservice to the families going through infertility not to give them all of their options.  Choosing childfree should not be the default when nothing else has worked–it should be a real option with lots of resources and discussion like any other choice (adoption, IVF, etc).


So here we are…our 7th NIAW.  To all the people who have been there for us, supported us, tried to figure out the emotions and feel the feels with us…thank you.  We love you.  Your kind words, actions and thoughtfulness mean the world to us.  And we can’t wait to see what the future holds–with or without kids.


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