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Join the Movement!!

“What is it like to be a midwife with infertility?”  After the usual annoying questions like “Have you thought of adopting?”, that’s the question I got asked the most.  It was hard to answer;  after all, I don’t know what it’s like to be an architect or a banker with infertility.  I’d guess that most women feel like they got a slap in the face when they are told they may never have a spontaneous conception.  Mine felt like a pie in the face and a kick in the ass – just as painful, with the added humiliation of being the butt of someone’s joke.  Most days I trudged through the endless cycle monitoring, hormone shots, ultrasounds and blood tests the same as everyone else, just trying to stay sane, or a relative facsimile thereof.  However, like most women, there were pauses after a failed cycle or miscarriage when I would ask “why me?”.  Why me as a woman who, although will never be canonized, tries to be a good person.  And, why me as a midwife?  I’ve spent the bulk of my adulthood trying to help women stay strong while bringing life into the world.  Wasn’t it my turn now?

Besides the “why me?” cry of the victim, there was another “why me?”.  Spiritually, I tend to waiver between the two schools of thought: that a divine presence has given you a specific challenge that you need to learn from, or that life is random but the point is to draw meaning from the struggles we have.  I just read a quote from the Dalai Lama:  “There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’ Either way, I started to ponder in the midst of infertility what my contribution should be.  I guess helping women who were pregnant after infertility was the obvious course.

Once I started thinking about how pregnancy might differ after struggling to conceive, I started really talking to my IVF patients about their experience.  Although I always thought I was a good listener, there was a difference now.  I don’t know if I actually started asking different questions, or that maybe women just get a sense of someone in the same trench.  Either way, I started learning a lot from my patients.  I also started looking online and as usual, Resolve provided some of the few resources for women in this subgroup.  (http://www.resolve.org/support-and-services/pregnancy-after-infertility/myths-and-facts.html).  At the time, in 2005, there were a few blogs but not much else.  It has been great to see more and more resources turn up over the years, like PAIL bloggers http://pailbloggers.com, and Resolve’s discussion boards http://www.inspire.com/groups/living-after-infertility-resolution/.

The thing that troubled me then, still troubles me now:  the virtual silence from my own community.  Most of the medical literature on ART pregnancies have to do with medical risks, and what little there is on psychological well-being is inconclusive.  In my own tiny corner of the obstetric universe, I try to educate my colleagues when the opportunity arises.  The reaction has been mixed at best.  In our practice, we offer patients shared medical appointments for various reasons, including prenatal care.  I tried to start a group specifically for women getting prenatal care after infertility or loss, but the lack of support was prohibitive, including one of our reproductive endocrinologists who thought that women should be “normalized” once they’re pregnant.  I think that sums up the lack of understanding from the medical community and the general public.  It’s also the reason I believe the psychological studies conclude that a woman who has experienced infertility is either a:  more likely to be anxious or depressed, b:  less likely to be anxious or depressed, or c:  has the same incidence of anxiety or depression during pregnancy.  We as a medical community and a culture like to lump experience into either disease or healthy, normal or abnormal.  Infertility influences a woman’s relationship with her body and therefore pregnancy.  It’s not bad or good, normal or abnormal.  But it’s there, and our unique experience deserves to be acknowledged, otherwise, we feel anything but “normal”.

I believe Andrew Solomon said it best in his book “Far From the Tree”, referring to the ongoing debate about wether conditions like autism or deafness are diseases or identities:  “We often use illness to disparage a way of being, and identity to validate that same way of being.  This is a false dichotomy.  In physics, the Copenhagen interpretation defines energy/matter as behaving sometimes like a wave and sometimes like a particle, which suggests that it is both, and posits that it is our human limitation to be unable to see both at the same time… Many conditions are both illness and identity, but we can see one only when we obscure the other.  Identity politics refutes the idea of illness, while medicine shortchanges identity.  Both are diminished by this narrowness.”

As midwives, we believe that the journey matters.  How you bring a baby into the world is an important piece of our identity as women, as well as how he/she was conceived.  The American College of Nurse Midwives makes buttons that say “Listen to Women”.  This is why I became a midwife:  to give voice to women.  Those who experience infertility are a comparatively small group of women, and women who become pregnant after, an even more modest pack.   To give us voice has been my calling since taking the journey myself.  Maybe it’s, like I said, finding a purpose makes my struggle worthwhile.  Maybe it’s penance for all the women I cared for before understanding what it was like to be on the other side.  But here I am in my small corner of the world, trying to educate my colleagues, and be a source of support to women who seek it.  I presented at a professional conference in 2011, and will again at our American College of Nurse Midwives in May.  And I started my blog, because I wanted join the chorus of bloggers as someone who could offer support both as a midwife and a friend.  Not exactly a shout from the mountain top, but as one of many voices who want our loved ones to know the following:   that infertility deeply affects our lives, even when treatment is “successful”; that pregnancy and parenting is not easier for us, just because we tried harder for it and we still need our friends and family; that it’s difficult to emerge from the isolation of infertility and ask for support, so we hope you’ll be there for us.  Mostly that, even when our bellies are showing, and sometimes, even when we’re pushing a stroller around, we still feel “infertile”.  It’s not good or bad, not an illness or deformity, but it is the prism through which we now view life, part of the fabric of the women we are.  Thanks to organizations like Resolve, we are finding our voice.  Please visit their website and lend your support to this organization in any way you can.  http://www.resolve.org/infertility-overview/what-is-infertility/

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