Why Everyday Needs to be National Infertility Awareness

I was naive in thinking that the questions of when I'll be having a second were going to be nonexistent. I've gotten this far (3 1/2 years) without a lot of curiosity directed my way, so it seemed logical to assume that I dodged that always-awkward bullet. I even let the preparation for my canned response slide in the back of my brain, nearly forgotten. But lately the questions have been cropping up again, despite my out-and-proud IF status, and as always, I give them my standard (though sorely unrehearsed) answer:

"I don't know. It took us almost five years to have G. We needed a lot of medical intervention, so I'm not sure we'll get that lucky again, but we'll see... "

If they ask further, I am always happy to share more. In fact, most probably regret asking because I stop just short of getting out a diagram of the female reproductive system. But more often than not my response solicits a polite, "Oh, OK. I hope it happens for you" from them after which the subject is dropped entirely. Except today.

Today, a particularly thick-headed co-worker of mine kept on the subject. It baffled me that she asked whether we would have another given that she's an active Facebook user and I had been making up for lost NIAW time with multiple posts about our story just a few days before (my guess: I'm probably on her blocked list-ha!).

At first the conversation was benign enough. And then, it happened. As if she had just consulted a manual on exactly what NOT to say to someone who is infertile, she went straight to a few of these tried and true gems:

"Maybe you should just leave well enough alone."

"You know, I've heard that when people stop trying so hard, it happens for them. My brother's friend's sister tried for a long time and when they finally stopped trying, it happened!"

"Adoption? Oh, no, you want to stay away from that. You have no idea what you'll get. You've seen what those kids turn out like."


I'll wait a moment while you collect your jaw off the floor from that last one.

Here's the crazy thing. I've heard similar responses from people who (prior to saying them) I considered to be some of the most brilliant people I know. This particular coworker, while no Rhode's Scholar, is by society's standards an educated and moderately intelligent woman. But that doesn't buy you common sense and emotional intelligence, does it?  In fact, some of the brightest people I know have also turned out to be some of the densest when it comes to understanding infertility. I have one person in my life in particular who was an ivy leaguer and were it not for my very thorough 'training', he would still be saying some of the same dipshit things to this day.

Mel from Stirrup Queens recently revisited her NIAW post from last year about how everyday is National Infertility Awareness for her. That post in particular resonated with me, but not nearly as much as it did today when I realized that despite my social media efforts in the last week, I was still confronted with this obvious need for continuing education about infertility. Laying down a few carefully-worded status updates once a year just won't cut it when these are the comments I'm still getting after all this time.

There simply is no true understanding of infertility unless you've been there. We all know that. The million ridiculous comments on articles about infertility spell that out plainly enough. But that doesn't mean that our efforts are all for naught.  I know that if we keep taking every small opportunity like this, little-by-little, we'll get there.

And what did I say to her? Well, I (politely, of course) set her straight that infertility is very much a medical condition, that my family building decisions were my own and that no, 'those' kids (meaning adopted) do not follow the exact trajectory of the select few she was referencing (and, by the way, she works with kids with emotional disturbance--that's a pretty skewed sample from which to draw a conclusion about any population). Whether my words actually moved her remains to be seen, but I think she reminded me why everyday needs to be about infertility awareness.

The Stomach Bug Who Shall Not Be Named

In comparison to years past, the showing on social media for National Infertility Awareness Week was pretty remarkable. It's heartening to see how much it's expanded over the last few years. There were many in my friends list who did a great job contributing on an almost-daily basis. One of my buddies had a 'topic of the day', including everything from 'Adoption does not cure infertility' to 'Infertility Etiquette'. Some friends posted their personal infertility stories on Facebook and of course RESOLVE was posting topics frequently to which countless people responded. I've never felt more proud to be a part of a community in light of this showing of support. Of course, it goes without saying that being infertile sucks donkey balls and I'm sorry others have to be here, too, but for better or worse, I am in the company of some truly remarkable people.

Posting everyday was initially my intention until I was hit full force with a beast whose presence was so vile I can only describe it as 'the stomach bug who shall not be named'. By the end of the week, my nausea was still blinding, leaving me certain that this couldn't possibly be anything ordinary. Of course, that means running to Dr. Google and looking up insane diagnoses, thus forcing my real and non-Google doctor into a series of needless tests and requisite eye-rolling on the other end of the line. I'm not usually that histrionic about health stuff, but I was desperate. I could barely work and wanted respite. After a little over a week later, my stomach still isn't quite 'right', but I can function. I'll take what I can get...

Being in the ballpark of reproductive age, you can imagine how many times I got, "are you sure you're not pregnant?" Gotta love that one. Yes, I am 99.99999% sure, but thanks for reminding me of my non-existent chance of reproduction without the use of multiple lab coats and a nice young lady looking to earn a few bucks. So, of course, that series of labs included a pregnancy test. I groaned when the phlebotomist mentioned it and bit my tongue from explaining the groan. You see, if I am going to be tortured by a BFN, it needs to be on my terms. I never leave it to a phone call. Every negative (or positive) I've ever received has started within the confines of my own bathroom, so when the nurse calls (or when the email lab result comes in*, in this case), it's never a surprise. I don't leave it in anyone's hands but my own. I grieve on my timeline. Maybe that's part of my controlling nature, but in this world of IF, so little is private or within our hands that I seize any opportunity I can to have that moment without the intrusion of others.

How do you handle big news?

*Not to ruin the suspense, but it was negative.

NIAW

Join The Movement

   I can think of very few things in this world more isolating than being infertile in a fertile world. It's an incredibly lonely place to be. In this ‘bump’ obsessed culture where the term ‘family’ is only awarded to those who reproduce, many of us are silenced by the unspoken message that we are an outlier because of our infertility, lesser even. It is a secret that we often work so hard to keep hidden, and we're good at it.  So many of us actually go through incredibly invasive medical procedures and heartbreaking losses without so much as a whisper escaping us.  We go to work and somehow muster a false smile, leaving the tears for when we are locked inside the bathroom stall.  We are the ones at your family reunion who stand amongst you wondering the whole time whether we will ever be given the gift of helping grow the family tree, but you wouldn't know because many of us leave our confessions for the ride home. Infertility just isn't a topic that crosses many family dinner tables, or any tables for that matter.  And this is to our great detriment.

So, when people are surprised to learn that infertility affects 1 in 8 couples, I can understand that. We are one of the quietest large groups out there, but we are getting louder by the day. The world-at-large must be informed of how common this disease is and most of all, this message must reach our infertile brothers and sisters, so many of whom are fighting this battle from a lonely corner. We need to affect change, bring down the barriers to accessing family building and let every single person facing infertility know that they are not alone and that there is strength in our great numbers, but the only way any of this can happen is if you join the movement.  Whether you are a friend, family member or co-worker of someone facing infertility or you yourself are facing infertility, I invite you to come along!

What should I do?

How you join the movement will be a deeply personal decision. Not everyone will take to Good Morning America about Male Factor Infertility as my husband and I did. Not everyone will stand at the Capitol and share publicly what the heartbreak of infertility and being prevented from building their family because of a lack of insurance coverage looks like, but everyone can contribute.  Everyone, and in multiple ways.

However small your contribution is will not be overlooked by our community. Every voice is valued. Each step we take is a step closer to breaking the stigma, supporting each other and helping gain access to medically necessary treatment. Below are some ideas on how you can join the movement and help those within the infertility community who are working so hard to build their family:


Infertility forums: Not everyone is ready to be public about this very personal journey for a variety of reasons, not the least of which is cultural and religious beliefs surrounding the use of reproductive technology and/or the stigma and shame about infertility. This is the beauty of the internet. You can post anonymously and in doing so, both receive and provide life changing support without compromising  'real-life' relationships. We get it and with your help, we know you get us, too.

Blogging: The issues that surround infertility are multi-faceted. I've been blogging about infertility for five years and still haven't run out of topics.  And this community is really quite large and always at the ready to lend an ear! We welcome you to the fold (and this can be done anonymously, too!).

Speak: Speak out loud. Confide in a trusted friend or family member. Find a safe place to let the reality of what infertility looks like be heard.  You never know. Perhaps they too have walked a similar path and your words could begin some much-needed healing.

Social media: If and/or when you're ready to join the movement, social media sites like Twitter, Facebook and Instagram are ready for your voice. I guarantee that if you have more than eight followers, at least one of them has been there and would feel relieved to know they are not alone.

Join a RESOLVE or infertility support group: This was a life changer for me. This is where, after four straight years of silence and heartbreak, I uttered my first words about my own infertility to a small group who finally understood exactly what I was saying. To this day, I am still close friends with those members. I still turn to them for the type of understanding I can't quite get elsewhere.

Start a RESOLVE support group in your area: RESOLVE is always looking for new leaders to help bring support to the infertility community. If you're at a place in your journey where you're ready and able to give back, this can be a greatly rewarding, and again, healing place to begin.

Media outlets: If you're feeling especially bold and are comfortable enough to go forward, there are often many opportunities to share your infertility story with media. Do you know how healing (and normalizing) it is to see a regular couple on my TV screen relating struggles that we've faced when for so many years I felt like a pariah? It's powerful!

Lend a Hand: If there is someone you know of who is struggling to access insurance, needed medical assistance or workplace rights related to infertility and you have the tools to help them, take that opportunity.  Turn your own heartache into a meaningful experience by helping someone facing similar hurdles.

Become an infertility advocate: Joining the movement can be as simple as writing your senators and representatives regarding a variety of legislation that will affect the lives of those living with infertility, including: making the adoption credit refundable, fighting anti-family bills and/or supporting the Family Act tax credit when it is re-introduced.  Invite your friends and family to do the same. 

Volunteer: To become even more involved, RESOLVE is always seeking people who can become Project PROTECT advocates.  Meet with your local legislators to address bills pertinent to family building or simply to educate them about the lives and needs of those living with infertility. 


 The ways in which you can join the movement are endless.  And this is just the beginning.

  The very real loss those of us facing infertility experience-the loss of adding to our family in the way we dreamed or even the loss of possibly parenting a child at all is often misunderstood and most importantly, underestimated. The experience of infertility can put us on an island, a place whose painful experiences feel unique only to us. That is, unless we find a way to each other and eventually, to the world-at-large to share our experience. So, please, join the movement and spread the word. Let us see that we are not alone in this.  

To learn more about infertility and how you can join the movement, go to RESOLVE.
This post was written to honor National Infertility Awareness Week, April 21-April 28.

Dusty, but Punctual Egg

It seems to me to be a cruel trick of fate that the almost peri-menopausal girl has never been more regular in her life. 28 days, almost down to the hour since late last year. Regular=more fertile? Nope. It doesn't matter if your egg always arrives on time if it's coated in a thick layer of dust!

Desperation Blogging

I am literally trapped in my hairstylist's chair as I type this listening to some chick beside me complain about her pregnancy symptoms and the fact that she was soooo worried she didn't get pregnant the first month she tried because she didn't want a 'Christmas baby'. Holy carp. Shoot me. God forbid anyone have one of those dreaded Christmas babies!!

My Focus

Is it sad that I got more excited about fertilized eggs than about him?

I Done Got Therapized

Well, not actually. Therapy (in the very traditional sense) was at a minimum when we met with our new IF therapist last Friday. Although Mr. S was dreading getting 'analyzed' (ha ha), our almost-2-hour session together turned out to be more 'psycho-educational' than anything. After working with a different therapist this time last year on grief, I became so used to (and eventually exasperated by) explaining IF terminology to her that you can imagine my surprise when this new therapist started schooling me. It was refreshing.  She was throwing out the AMH, the FSH, the clinic stats-yeah! Now you're talking my language! And while I thought I was walking into a regular IF therapist's office, I didn't realize that she specializes in alternative family building/3rd party reproduction in particular. Score!

I have to say, aside from a few un-PC blunders on my part (ie calling the egg donor the bio mom--oops--that scored me a few ignorance points), I can't say that she revealed anything too earth shattering to me. But the discussion sealed what I've known almost from the start (which is the true brilliance of therapy-revealing what you already know): I will not do this completely anonymously. I just can't.  I've touched on my reasons for this in an earlier post and we discussed these in great detail, specifically centered around the issue of our child's identity building. Interestingly, our psychologist published a blog entry shortly after we met on this very subject and the best summation of my feelings about the matter can be found in her words:

"It is commonsense that disclosing donor origins to donor conceived offspring will lead them to have questions about the donor, and research supports that information about donors is important to donor offspring. Several studies indicate that donor conceived offspring want to know about their donor origins, request information about the donor and feel a sense of loss and questions about their identity when knowledge is lacking. " 

While this does not specifically address having direct contact with the donor, I can imagine that the possibility of this is the only way to ensure that if there are a lot of questions later, this would be the best way to fully address them (as a donor profile doesn't tell everything and can't purport to anticipate a future child's questions). I mean, don't get me wrong. I don't necessarily envision the donor sitting at our table for Christmas (but you never know). What I do envision is arming ourselves now so that we may fill in any gaping holes later.

So, it is for this reason that we cannot go the 'cheap' route (cue the laughter-as if anything in this business is cheap-bwahahaha!). What I've found is that the clinics whose programs are completely anonymous tend to be fairly 'economical' in comparison to those who offer some sort of future contact between offspring and donor (or are willing to work our legal docs into the contract, which is an added expense). That's not a hard and fast rule, but for those clinics that I am willing to pursue it seems to be the case. Unfortunately, we didn't walk into this prepared for a cycle that's at best twice that of a 'regular' IVF, so we have some time to mull it over while we collect our coins.

I think the truly defining moment in therapy, though, was the moment that made me realize how open my heart is to this new path.  As we began to discuss how we would explain our child's conception to them, she gave us an example and talked to us as if she were speaking to a five-year-old who is donor conceived. Her words were so simple and then, being the big old sentimental schmuck I am, I started to tear up.  My son's story is not that much different. Obviously, there will be an additional person in the picture with egg donation, but generally speaking, conception in either of these ways is not a 'typical' story. But it is our story and one that I embrace and think is beautiful. Listening to it, I realized that it primarily spoke of how much our child (and possibly children) is wanted and what great lengths we went to meet them.  If that isn't a story about love, I don't know what is.

For now, I am ready. While I am not naive in thinking that my grief took all of three weeks to process, I do know that I am now more excited about the prospects of building our family in this new way than saddened.