NIAW

It’s National Infertility Awareness Week.  This year’s theme is “Don’t Ignore Infertility.”  As if I could possibly ignore it, even if I wanted to.

I know this theme isn’t directed at me, at us, who live with infertility every moment of every day.  It’s for those who are blissfully ignorant of its existence.  Or those who want us to stop our whining and “just adopt.”  Or those who have the power to make decisions about our health and have decided that infertility is not a medical condition worthy of insurance coverage.  Because to them it’s a lifestyle choice.

But we didn’t choose this.  My husband didn’t choose to be born with a malfunctioning pituitary gland.  We didn’t choose to have to shell out thousands of dollars for medications that I have to inject into my husband’s ass three times a week.  We don’t choose to have needles stuck in our arms and Hubby’s semen examined under a microscope.  This is not the “lifestyle” we envisioned for ourselves when we started dating 8 1/2 years ago.

Or maybe, in a way, I did choose it.  Because he told me about his condition all those years ago, and I still chose to be with him.  Does that mean I deserve everything we’re going through now?

Obviously, I have a lot of bitterness and unresolved anger regarding this issue.  It’s not directed at you, dear readers.  But if you also have anger issues and would like to know where to direct it, RESOLVE has a whole list of ways you can let policy makers know how infertility affects the lives of one in eight couples nationwide, like us.

My anger and bitterness are actually not the reasons I started blogging.  What I wanted was an outlet, a community who understood the emotional and physical pain of infertility.  And to drag myself out of a deep funk.  It has helped me tremendously, but, aside from those random search terms that pop up on my site stats, I’m pretty sure this blog isn’t doing much to reach out to people who don’t already know firsthand how damaging infertility can be.

In my daily life, I am fairly open about our struggles.  Many of my coworkers know that we’re in the midst of treatments.  They also occasionally get an earful about the fact that we’re paying for all of this out-of-pocket.  I’ve had the uncomfortable conversation with my supervisor, asking for time off for procedures that are cycle-dependent and therefore can’t be scheduled with much advanced notice.

My friends also know what we’re going through and are, for the most part, understanding and sympathetic.  There are certain people (the gossip machine of family members who shall remain unnamed included) with whom I simply won’t bring it up.  If they want to ask questions, I’m happy to answer, but I’m not volunteering any unsolicited information about our reproductive abilities and/or status. 

I’m not embarrassed about that fact that we need medical intervention to have biological children.  But the details are rather private (not that you’d know that from reading this blog) and aren’t open to public debate.  Which is why I will never openly discuss our treatment on facebook.  I have friends there whom I’ve communicated with privately, but I will never post a status update regarding semen analysis, the trans vag invader, hormones, needles, or the quantity/quality of future embryos.  Not gonna happen.

I don’t have a huge platform from which to wave my flag of infertility awareness.  I think of it as sharing information in circles.  The circle of friends or coworkers who may take that knowledge into a different circle of friends, and so on.  Plus, it saves me the work of trying to remember who knows what regarding our struggles and treatments.  I just assume I’ve been open with everyone I encounter on a daily basis (families I work with being the obvious exception), so I don’t have anything to hide.

How do you reach out, advocate, or otherwise ensure that infertility is not ignored?

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17 thoughts on “NIAW

  1. I have thought if I am willing to do anything this week to help spread awareness. Will I mention it on Facebook? No. Twitter? Maybe but I have no following so who cares. In my blog? Maybe, but I dont know that the people that shed tears over this daily really need any awareness.

    Your post made me think. Who in my life knows about this? The answer is My RE, my acupuncturist, 1 friend in Canada, and my husband. I have never told my family and even my stepdaughter doesnt know because why tell her anything about this if it doesnt work?

    If I did tell my friends or family truthfully, I am afraid they would judgement and say “its your own fault you waited too long” and while I can cope with my friends and families kids, their pregnancies and their happinesses, Im not sure I can cope with being judged for not having kids within the general populations prescribed timeline.

    My collegues dont know, my aquaintences dont know, the people, I generally overshare in my life with dont know, and while I have no problem blabbering away using my real name and my real picture, the blog isnt tied to me personally so that there could possibly be an professional reprecussions.

    Maybe I will make a general announcement about NIAW on FB with some statistic and some observations. Id like to participate in NIAW in some kind of meaningful way. Im just not sure how.

    • I have also considered a general facebook announcement of this week and what it means. I don’t think you should feel obliged to announce it to anyone you don’t want to, though, especially if you feel like you’ll be judged. In my experience, people have been understanding, or at least not outright mean about it, but I know not everyone has been that fortunate.

      • thanks for being able to see past my enormous typo. Lotta judgmental people out there. I guess some peoples tender spots are different than others.

  2. Thanks for posting the Resolve list – I’m going to check it out now! In the meantime, I don’t think you “asked” for any of this any more than those of us who just assumed getting pregnant would be easy – you know, like it is for EVERYONE else!?!? It’s ridiculously difficult and painful and costly! I was surprised to find that I couldn’t even purchase health insurance that covered fertility treatments in my State. How is that fair?!? So much needs to change, and while my close friends – and many total strangers – know about my struggles, I think I need to do much more.

    Oh, and, Amen to not posting FB status updates! And, for me, ultrasound photos. I remember seeing many during my years of infertility and they could ruin a perfectly good day by reducing me to tears in an instant. I won’t do that do anyone else. I honestly think that some of my FB friends will find out I “was” pregnant after they see a baby pic!

    • I think not posting u/s pics on facebook is probably the kindest thing you can do for those of us still muddling our way through! The insurance thing is just ridiculous and makes me irate every time I think about it. I hope you find something on the RESOLVE list that you’re passionate about and can do some convincing!

    • I like to think of all those weird search terms as accidental advocacy. They may not be looking for it, but they’re going to be educated!

  3. A wonderfully heartfelt post. 🙂

    I have to say, I did come out on facebook about our infertility. I one day got the courage and said enough is enough. I created another blog because I wasn’t ready to share my regular blog with my parents or the people I went to high school with that friended me and decided to post a series of posts for NIAW that I am sharing on facebook and twitter. These post are all about awareness and I encourage people to share. I’ve been surprised by the support that we have gotten and from the least expectant people.

    But its hard coming out about it. When I did come out, they knew that we had infertility but they didn’t know the details. When we had to travel for the appointment, most knew we were traveling for an appointment related to our infertility but not the details and others figured it out because some people commented on pictures or my facebook wall asking how it went. I’m regularly walking the fine line between what to share and am I sharing too much. Sometimes it gets personal. But I try to sum it up versus telling them every little detail. If we do IVF, I won’t post about the egg retrieval, but word would get out that I was traveling and its related to our infertility while those close to me and have been by our side since diagnosis would get regular texts about egg retrieval or how many embryos. Sometimes I’ve had discussions with my 80 year old grandparents about IVF or explain to my 65 year old friend/former boss exactly what we are going through because hes curious and this is something he has never had to deal with in his lifetime. People have defriended me, but others now openly ask questions when they normally wouldn’t. So progress is progress, I guess. Every little bit helps. At the end of the day though, I’m glad I came out, awkward conversations and all but I have a great appreciation and respect for those that haven’t/can’t or only partially come out.

    • Wow, that is brave. I’ve told people through private messages on facebook about our infertility, some of them had supportive comments, some of them I never heard from again. I guess the issue is who I’m friends with on facebook, which is a lot of family members that I’m not necessarily all that close to and people I went to high school or college with, who I figure just don’t need to know. I think it was smart to start a new blog though, for those people you wouldn’t necessarily want to share all the details with. Good for you!

  4. Now I have no problem sharing it with friends and family, everyone has been and am very supportive. But after a lot of thought I decided to talk with the people I know about it but not share the link to my blog. I’m happy to answer questions though. Since NIAW is a US National thing I don’t feel passionate about participating fully, I’m trying to find similar organisations in the UK to see what’s going on and if there’s something to get involved with over here.

    • That’s a great idea. I hope you can find an organization similar to RESOLVE, where you can get help and support, as well as make your voice heard.

  5. All of our friends and family pretty much know. My group of friends pretty much consists of friends I made at work, with 1 or 2 exceptions. ALL we ever seem to talk about anymore is school, their babies/pregnancies, or my lack thereof. Tonight, I went a little NIAW-happy on Facebook. I occasionally put a status update related to my not-so-fertile life, but they’re usually pretty vague. My friends can read b/w the lines, but the general public can’t. The most overt thing I’d done before today was change my profile picture to a pink & blue ribbon on the 1 year anniversary of our miscarriage…just cause I felt like I had to do something to acknowledge the worst day of my life.

    Today, though, I made a big jump. I didn’t really think about it first. A friend who is struggling with unexplained infertility posted an artcile about what not to say to people going through infertility, so I shared the link and made a comment about it.

    Then, I shared a picture that Bubble Bath Goddess posted on her blog, http://frommybathtub.wordpress.com/. People started liking the article and photo. A friend thanked me for posting it. Then I went all NIAW crazy. I made a comment saying that I was officially coming out of the infertility closet, that my ovaries suck, and that we need to get rid of the taboo surrounding all of this.

    Enter: fear. I got scared almost immediately b/c I’m not sure if that will bother people – if it’s too “in your face.” That’s not really my style usually. I went to delete the comment, but I didn’t. Because doing something that scares you is good for you, right? 😛

    • Yes! I think so, anyway. If you’re brave enough to do it in spite of the fear. I’m so happy to hear all these stories of how people are sharing their struggles, and it (almost) makes me want to come out on facebook, too!

  6. I’m pretty open to anyone who asks or when pressed on when I plan on having kids, but it’s not something I bring up on my own. My co-workers all know (and most of them are guys!) and all my close friends and immediate family know about our struggles. Today I posted the NIAW Resolve article about infertility ettiquette to my FB wall. That’s probably the closest I will ever come to “outing” myself on FB. 🙂

    • I did the same thing yesterday, as well as posting the video from the Today show about Giuliana & Bill. I’ve gotten a few comments and likes, but not from anyone who didn’t already know our story.

    • Thanks, Elizabeth. Lucky you, you got to spend NIAW being a tourist (sort of), while I waxed poetic about the TVI. Let me see…which would I rather do? 🙂

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