“Coming Out” About (In)fertility

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I haven’t been keeping my fertility challenge a secret per se. I have, however, for the past three years struggled negotiating the elusive “outside world” in relation to my frustrations, disappointments, and fears trying to conceive, which have wreaked havoc on my sense of self. More often than not, it has been easier (and felt safer) not to share these pains, pushing me further into isolation.

As an academic, I study health and disease narratives, politics of the body, and feminist discourse yet I’ve feared writing about my personal experiences that intersect my research interests. It has taken me three gynecological surgeries (one from IVF), 70+ needles (and counting), countless pills (steroids, estrogen, progesterone, baby aspirin, prenatal vitamins, letrozole, clomid, metformin, valium, antibiotics, etc.), and too many bloody months to finally write myself out of this silence.

Taking pen to paper (and fingers to keyboard), I started writing a nonfiction story about my IVF cycle last fall. It morphed into a meditation on what it felt like being a reproductively challenged woman in this society, a reflection on my late mother, and a realization that I no longer recognized the relationship I had with my body. On a whim, I submitted an abstract to (and got accepted to talk at) this medical humanities conference in Iowa where I shared my story and discussed the politics of fertility challenges as a larger social issue. This was my first “coming out” to people I didn’t know.

It felt really good to share.

In my breakout session many women shared their fertility stories, which was heartening. Some women were still grieving their miscarriages, job loss because of a pregnancy, and isolation despite several decades passed. Others were feeling “the pressure” and felt conflicted about their decision to pursue demanding professional careers. We all craved a safe space to openly talk about our concerns beyond select friends and family. The group supported my assertions that there simply aren’t enough conversations (public and private) about, and support for, fertility challenges.

A woman I met at the conference just tweeted this blog post to me about unique (and not so unique) fertility challenges in academia. From her, I learned that this week is National Infertility Awareness Week. While I dislike the term “infertility” or its classification as a disease (it’s too final, stigmatizing, and pathologizing), I love the idea of raising awareness about fertility challenges and engaging more people in a nuanced conversation.

Although each woman deals with her fertility challenges differently, the Internet seems to offer general lists, guidelines, and tips on how to help support the women we care about. Here are a few. A Google search will yield more.

These lists are a bit crass but they cut to the chase. Personally, I rather share lists of what have been unusually difficult and unexpectedly comforting (beyond the obvious) rather than a “to do” and “don’t” list.

These lists are far from exhaustive, but here goes.

Unanticipated difficulties:

  • Knowing no one else in their early thirties enduring IVF or other aggressive fertility treatments is a psychological mind f*#k.
  • It was easier to give needles to myself than have my partner do it. I don’t know why.
  • Every medicated month, I’ve had disruptive hot flashes, emotional turbulence, chronic headaches, and/or fantasies of wanting to punch irritating people (often troublesome students I teach).
  • Not knowing why I’m not getting pregnant (despite ovulating, having balanced hormones, newly cleared fallopian tubes, and good general health) has been a hellish liminal space. Okay this one might be kind of obvious.
  • Trying to become a mother rehashes the pain of loosing my mother (over a decade ago) to breast cancer.
  • With more medical intervention and involvement, the emotional pressure and expectation of getting pregnant swell. Reoccurring periods become increasingly devastating. This has been hard to manage at school and work.
  • I really hate feeling pitied. If I sense another’s discomfort or pity, my instinctual reflex is to ease that person’s awkwardness by minimizing my own experience and pain, and moving onto other “lighter” conversation. This has been incredibly counter-productive.
  • Trying this hard to become a mother tests my feminist and liberal sensibilities about how I measure my self-worth and define the meaning of family.
  • People tend to be better at responding to difficult events (like loosing a parent) than difficult non-events (like not becoming one). This has been isolating.

Pleasantly surprising acts of comfort:

  • The number of friends offering to help me with the medical stuff: needles, doctor appointments, post-operative care, research, etc.
  • Male friends and family doing research and asking specific questions about my procedures to better understand what I’m going through. All of them did one and/or the other.
  • People asking how my partner is holding up and asking how to support him.
  • Frequent or spontaneous calls, texts, and check-ins from friends on the most “ordinary” days recognizing that regular days are often challenging.
  • The number of women (mothers and non-mothers by circumstance or choice) sharing their own fears and vulnerabilities about fertility.
  • People matching my vulnerability by sharing some of their own (fertility related or not). This has been a helpful way for me to remember that we all have “stuff” going on.
  • Telling fellow grad students and departmental faculty. They have been a surprising and most welcomed support system. It’s also a huge relief and source of inspiration to be around people who embrace my desire not to separate the personal from the academic.
  • Those who sincerely ask questions (medical details, emotional state, how they can help, or whether I wanted to punch anyone that day, etc.)
  • My reproductive endocrinologist giving me hugs. Frequently. And letting me cry on her shoulders.
  • People who ask how I am, then ask how I really am after I tell them “I’m fine.”

In the spirit of National (In)fertility Awareness Week, I’d love to hear your thoughts stories, or questions. Sharing is caring after all.

And because all health campaigns need celebrity spokespeople…

 

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10 thoughts on ““Coming Out” About (In)fertility

  1. gracieabd says:

    Thanks for your post. I identify with so much of both of your lists (except telling faculty–I’m not that brave, yet). Thanks for sharing all of the links too. I really found the truth in trying video helpful, not so much for the celebrities, but for the shear number of women and some men (celebrities and regular folks) sharing their stories. Good luck to finding your happy ending, whatever that may be.

    • Yuka JP says:

      P.S. My department is full of exceptionally strong, intelligent, supportive, progressive women (most who are parents), which has served as a great source of guidance and inspiration. I don’t think this is the academic norm. It was scary telling people at school/work but they have all been so supportive. It’s still scary “coming out.”

  2. Jane says:

    Thank you for sharing, Yuka and providing a much needed space for women to talk openly about these topics! I would love to start/join a hui for professional women to be able to continue these conversations…it helps me to know that I’m not alone in these challenges. I so admire your eloquence and courage, Yuka! I am thinking about you!

  3. danarei says:

    In seconding of Jane’s comment, I would love to join that hui of professional women needing a place to discuss all of these challenges that you so eloquently and bravely put forward!

  4. Stella says:

    After 3 failed celycs using Clomid, my OB referred me to Dr. Gago. We determined that I was not ovulating on my own (because no follicles were maturing) and would need to use injectible follicle stimulating meds. My body did not respond easily to the medication too much medicine would cause too many of the follicles to respond at once; too little would have no effect at all so each cycle meant anywhere from 10 to 20 days of injections at different dosages and daily trips to the clinic for ultrasounds to check on follicular growth and hormone levels to see what the next day’s dose would be. Everyone at Dr. Gago’s office was so wonderful my emotions were all over the place, but they did everything they could to be encouraging and supportive. I especially have to thank Jenny and Laurelle, the ultrasound techs, for keeping my spirits up through every long cycle. After several attempts with injectibles and regular intercourse, we moved on to several attempts at IUI, which were not successful. At that point we knew that IVF was the only avenue left. Before we moved forward, Dr. Gago performed an operative hysteroscopy to remove some polyps on my uterus (which I think, in the end, was necessary to allow for implantation). I started the medication for IVF in October of 2011. During our first cycle of IVF, Dr. Gago harvested 23 mature eggs, 19 of which fertilized an amazing result. My husband and I were thrilled. 3 days after retrieval, however, there were 8 viable blastocysts, and by day 5, there were only two left. Dr. Gago transferred both eggs, which meant that there were none left to freeze for future attempts. My husband and I waited nervously until we got the amazing and thrilling news that after 2 years of trying (about 9 months of which were with Dr. Gago), one of the eggs stuck. On July 23, 2012, I gave birth to our son, Isaac. He is perfect in every way and we could not be happier. We feel so lucky to have had success (and to have had success so quickly in the grand scheme of things). We are so grateful that we had Dr. Gago and all of her staff for making it possible.

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