As always, late to the party, but still intent on participating. To all members of the ALI community, I wish you a wonderful and fruitful National Infertility Awareness Week. For those new to the community or participating for the first time, here's a bit of background.
National Infertility Awareness Week (NIAW) is a movement that began in 1989. The goal is to raise awareness about infertility as a disease and encourage the public to become more informed about reproductive health. As our society is historically very squeamish regarding all things having to do with sex, this week is incredibly important as it only directly counters a lot of the myths and misinformation surrounding this disease, but also allows for an opportunity for members of this community to break their silence and step out of the shadows.
This movement is founded by RESOLVE: the National Infertility Association, which is a non-profit organization established in 1974. You can find more information about RESOLVE and all the amazing work this organization is doing here.
This year, the theme for NIAW is "Resolve to know more....," with bloggers being challenged to write posts based on this theme. There are already a number of amazing posts, covering everything from the facts about treatment, advocacy/educating others, family building options and even about infertility as a disease.
I'm taking a bit of a different spin.
Like many, one of the hardest and unexpected realities of a diagnosis of infertility was the emotional turmoil caused by this diagnosis. Coming from a family with no known history of fertility struggles, I immediately felt damaged as I was not following in the footsteps of every other woman in my family and conceiving within a couple of months of trying. This failure to connect ultimately lead to me distancing myself from them as they failed time and again to offer support and instead assumed that either I needed to calm down or accept that my situation was "deserved."
As Grey and I began our journey down the rabbit hole that is fertility treatments, we found ourselves becoming more and more isolated from others in our lives. With each surprise pregnancy announcement from others on the heels of another BFN or miscarriage, stealing ourselves became survival mechanism. Granted, there were moments people tried to reach out and support us. But time and again their attempts were either sloppy, as they felt the need to offer quick "fixes," or support waned fast as they found our situation too depressing. After all, everyone loves a happy ending and as time went on it seemed like we were doomed to never get ours.
I've talked before about how this community became my shelter from the storm that is this disease. Though I have not meet most of those who I've connected with here in person, the continual support and love I received became a lifeline and this space became a safe haven. Even now, as the road to resolution has become very clear, I find myself continually drawn back, trying to repay in what ever manner I can that love and support in any way I can.
There are days I most certainly fail. Saying the wrong thing or offending when it was the last thing I ever wanted to do. But I also know that silence can be so much worse.
Over the last few months, since the Beats have arrived, I've been allowing myself to rejoin the "fertile" world, interacting with those who are seemingly and blissfully clueless that infertility even exists. And during that time, as we've shared our story, a funny thing has happened: those who are not reproductively challenged have begun telling us their stories about friends or loved ones who have fallen out of their lives because of infertility/loss. They confessed frustrations about being cut off and feeling left out when they were "trying to help." One woman in particular broke down as she shared about how her BFF no longer is speaking to her after an incident where she assumed a day out with her new daughter would help ease the pain of her friend's recent miscarriage. After all, her little girl brought so much joy to her life; why was it awful to assume that joy couldn't be transmitted?
What's been interesting as we talked with people time and again is how there truly is this disconnect with understanding how emotionally distressing infertility/loss is. While most have been thoroughly educated on how to handle news of other life changing diseases like cancer, heart disease, Alzheimer's and even diabetes, with infertility and loss your average person is ignorant if not completely mislead. Time and again, I heard accounts from those battling this disease about platitudes like "just relax," "G_d's plan" and even "wasn't meant to be" offered, of suggestions of "have you tried X" recommended, of people suggesting that a couple should "just adopt" or "just do IVF" when they themselves have zero idea about the complexities of these processes. And most destructive, loved ones turning on these couples, lashing out at them in frustration, because they should simply "get over it."
With each of these conversations, Grey and I have tried to explain why the myths and misconceptions have been so destructive. There are the "ah-ha" moments, where people tell us that they had never considered that point of view or told us that they didn't realize what they were saying would be so hurtful. But many times there's been this unwillingness to accept our viewpoint, with those individuals firmly adhering to the misconceptions and myths as not doing so somehow negatively impacts them.
As a global community, it is time that we change the conversation about infertility/loss. Take away the stigma and allow those who are living with this disease to break there silence and share their stories. Knowing the facts about this disease and how complex and poorly understood it is. How difficult treatment is and the truth about success rates. Debunking the myths and misconceptions surrounding adoption and the process. And knowing that choosing to resolve by not parenting is NOT giving up but actually an empowering decision to reclaim one's life and live it fully instead of living in the darkness. All these things are so important.
Equally important is having the conversation about the emotional aspect. How the uncertainties and fears impact the daily existence of those living with this disease. And how important it is for loved ones to not fall into patterns that are know to exacerbate grief, instead focusing on being willing to listen, offer unconditional support and even educate themselves about each part of the process all while understanding that each journey is a personal one.
It's time we push for society to resolve to know more about the emotional devastation caused by infertility/loss.
For more information, please follow these links:
http://www.resolve.org/infertility101 (Basic understanding of the disease of infertility.)
http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)
WoW! Wow! Wow! That's the type of post I want to write on this subject. Factual, yet with personality that touched my heart. Now I need to think of something to write... (if I can get my behind in gear.)
ReplyDeleteThis is beautiful, Cristy. I love that you now serve as an intermediary between the two groups... what a beautiful and special role. I've often succumbed to the "they'll never understand" ideology, but that doesn't mean we shouldn't still try. Compassion and understanding are worth the fight.Thank you for the reminder and thank you for continuing to advocate for infertility awareness!
ReplyDeleteCristy, Thank you so much for posting this. I'm in the throes of infertility -- 3 failed IUIs so far, IVF this summer if this current cycle fails -- and I have felt that I am beginning to distance myself from others. I am not shy about talking about my struggles, but people just don't get it. Some of them don't want to get it, either. It's so frustrating when people spout the "why don't you X" or "just try Y" or "stop worrying about it and it will happen". They don't seem to understand that I'm not causing this problem by worrying about it. Anyway - I appreciate this, and I wonder if I can share a link with some folks in my life who might need to hear it? I think you have an important role to play as someone who has experienced infertility and truly understands the complex range of emotions that treatment entails. Hope you are doing well these days.
ReplyDeleteHi Cristy, thank you for posting this. I am in the throes of infertility treatment right now - 3 failed IUIs so far, and IVF this summer if the current cycle fails - and I appreciate your perspective. I have been dealing with well-meaning people in my life who just don't get it. I'm wondering if I can share a link to this post with some folks in my life? Thank you -- hope you are doing well these days. I think you have an important role to play as someone who has been through infertility and truly understands.
ReplyDeleteThis is a fantastic post. I was just talking with another woman who I've known for a bit but just learned is also infertile. The one comment I remember so distinctly from our conversation was "No one can understand. No one can understand unless you've been there. Infertility is something I wouldn't wish on my worst enemy." The emotional divide is so large and so hard to bridge.
ReplyDeleteTHANK YOU SO MUCH for this post. Very enlightening and I'm sure it'll help many people. :-)
ReplyDeleteWhat an important post to write, and what a wonderful job you've done with it! Each time I think I'm really, truly "getting through," I'm reminded that there is still so much ground to cover. My MIL, for example, has offered us 4.5 years of love & support (going so far as to drive up to care for me after my most recent laparoscopy), yet I was stunned and ashamed that at my long-awaited, somewhat-long-dreaded baby shower on Saturday she gave door prizes to the women with the most children and grandchildren. It hurt to know that the need to gently educate never, truly ends.
ReplyDeleteAnd, same goes right back at me now that I'm in this limbo of not quite trying and not yet parenting. Language matters, behavior matters, and nothing changes that.
There is so much awesome about this post. And Yes - we can say until we are blue in the face that "fertiles don't understand" and that's the problem. They don't. But on the flip side of that, I am starting to see (even though it hurts because we, as infertiles, believe we deserve the bigger pity party) that fertiles can't understand why they lose friends withOUT kids once they have theirs...I had a friend (who I haven't seen since high school but thanks to Facebook, we're "friends" there...) who has 5 kids now. She's 34 and her family has ALWAYS been VERY fertile. She was pregnant with her first at our high school graduation. Last week she posted something along the lines of that - of how "once you have kids, you lose friends". But they DON'T get it OR understand. Because infertility is such a "taboo" subject. It's like "what, you have feelings? OMG don't talk about them!" Like that woman in your post who took her friend out because she seriously honest to god thought that a day out with her baby would make her infertile friend who had a miscarriage feel better?!!!! Obviously we look at that and think "how insensitive!" but maybe - just maybe - that woman truly honestly thought she WAS helping (or at least trying to). Even my RE told me last week (in our 3 week follow up from my own miscarriage) that society doesn't talk ABOUT miscarriages enough (yeah, he was speaking to the choir). I'm the kind that I want to tell everyone. I'm NOT "rejoicing" about my m/c, of course, but I want people to know "hey, this is why I've abandoned our friendship" or "yeah, this is why I've been working from home a lot more". It's NOT that I don't like them or don't want to be friends with them. I just needed a lot of time to myself. That being around fertiles WITH kids hurts more than I can even begin to say. I posted a meme last week about "You'll never understand, but I'm glad you don't, because that would mean you would have to go through my pain and I'd never wish that for you." But again - on the flip side, it would be nice for them to understand SOMETHING so that they would know that the "just relax" and "stop wanting it so bad and it'll happen" comments are so hurtful.
ReplyDeleteBut until infertility quits becoming so taboo, the fertiles who don't even know that infertility is a true medical disease, they will never know.