Silent Sorority

Infertility Survivors Finally Heard

October 25, 2012

The Invisibleness of Infertility: To Pass or Not to Pass?

This is a story about the correlation of infertility and allergies.

Each Wednesday for a year I dutifully showed up at my local allergy office to get three painful shots. The nurse plunged a syringe containing a cocktail of pollens, trees and grasses into my right arm. In the top left upper arm she injected a shot for mold, dust and dust mites. Below it, a syringe mixed with cat and dog dander punctured my skin and sometimes (damn!) hit muscle.

I was a tween when I first started got allergy shots. Not sure of their value, I abandoned them when I went to college. I started again as a adult. Clearly, I hoped for a different result. I visited the shot station twice a week (six shots) for the first few months. After a time, I appeared each week. The goal? “Maintenance” — three shots every two weeks. Then taper to shots every three weeks and so on…

Between treatment for infertility and allergies, over my lifetime, I’ve kept the syringe companies in business. What do allergy shots have to do with resolving infertility? A great deal actually. Desensitization is essential for managing both.

Why? As one medical reference explained, “intentionally exposing the patient, in imagination or in real life, to a hierarchy of emotionally distressing stimuli results in the prevention or reduction of immediate hypersensitivity reactions.” In other words, years of pregnancy announcement and non-stop parenting talk from friends and family decreased my discomfort and response. My recovery time today is almost instant, but it wasn’t always thus.

I could dodge infertility entirely — take a pass — and let people think I was ‘childfree by choice’ or conveniently come down with ‘infertilty amenesia’ (forget it ever happened). That, however, is missed opportunity. Instead, I discuss my infertility as readily as my asthma and allergies. For instance, I was a few minutes overdue for a lunch today with my male boss because I was in my car tuned to NPR.

“Sorry, I’m late,” I said. “NPR hooked me with a segment on freezing eggs.”

This elicited confusion and raised eyebrows. (He, by the way, is the same understanding boss who made a brief appearance in Silent Sorority.)

“Women freezing their eggs for future fertility treatments,” I explained. “Talk about complicating the whole infertility discussion. You know, your kids and their friends are going to have it much tougher than I did…”

He nodded and asked, “Have you and Alex ever wished you’d been born during a time when the doctor just said, ‘I’m sorry, we can’t help you.’ Would it have been easier?”

“Hell, yes! It’s not like the science that was available to us [ICSI IVF] did us much good. I’m glad I don’t have to think about freezing my eggs. Talk about a new way to instill guilt and blame.”

Could we have thrown good money after bad? Sure. As I’ve said before, the decision to stop treatment for our unexplained infertility wasn’t about the money, though it was a factor since none of our treatment was covered by insurance. It was about the heartbreak.

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Do I regret pulling the plug on scientific intervention at 40? No. We took treatment as far as we were comfortable and kept at it the old fashioned way hoping for a miracle conception (and had some seriously good sex, so that was a consolation prize).

After ending our science experiment and distilling all the emotions, I realized that like Salieri the embittered composer in the film Amadeus I needed not only to forgive others for their ignorance. I also had to accept my own physical shortcomings. I no more hate my uterus than I do my lungs. Each is faulty. But that doesn’t mean the rest of me doesn’t don’t add up to good stuff.

There are two things now that drive me: 1) reducing stigma associated with infertility. I’m no more ashamed of it than I am about my asthma; and 2) helping others realize that treatments are not a sure thing. That belief only sets up women (and couples) for greater difficulty.

U.K. Blogger Lynn Schrieber weighed in on our discussion last night: “As my friends and I age, we realise that medical technology is not always enough. That sometimes even with the best doctors and procedures in the world, some women will not conceive, or carry a child to term. If a woman is unable to have a child, she is left with no idea of what to do, as our society has built up this false ideal of how our lives should be.”

Further, Mary from the Silent Sorority Facebook page noted, “It’s almost seen as sacrilege in these days of endless possible new treatments to say enough is enough. But that should be seen as a viable option as well, and not one that needs to be hidden away.”

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Amen. Just as my asthma is a disease, not all infertility can be cured. Some 12% of the population (male and female) have fertility problems, regardless of age. It’s time society recognized that. We shouldn’t have to apologize or be ashamed because our bodies weren’t up to the job. We also don’t need society judging us harshly because we’re not living up to its false ideals.

It’s not just here in the U.S. In Australia, Julia Gilliard has been under attack for months for not being a mother. Jody Day lays it out here: “As there have never been so many women in our culture not involved directly in child-rearing, we are looking at a challenge of how we define what it means to be a woman if you’re not a mother.”

What can we do? Something women are really good at: communication. Let’s change some attitudes!

News Reports and Studies, Pop Culture 22 Replies to “The Invisibleness of Infertility: To Pass or Not to Pass?”
Pamela Tsigdinos
Pamela Tsigdinos
Writer, blogger and, oh, yeah, infertility survivor. My memoir, Silent Sorority, tells the whole story. There's a movie in there somewhere. Given the quirkiness needed to relate it all I'm thinking Jennifer Lawrence would be a good fit.


22 thoughts on “The Invisibleness of Infertility: To Pass or Not to Pass?

    Author’s gravatar

    That’s an analogy I can relate to, seeing as how I, too, had allergy shots semi-weekly from middle-school through college. I especially like the idea that neither are shame-worthy.

    “Not all infertility can be cured.” Yes. And like a casino, a person in treatment can find it impossible to tell if the NEXT pull of the slot machine arm is the one that will yield a jackpot. It’s hard to know when to walk away, especially when you have all that hope.

    Author’s gravatar

    “In other words, years of pregnancy announcement from friends and family has decreased my discomfort and response. My recovery time today is almost instant, but it wasn’t always thus.”

    I resonate with this so much. Desensitization just became a part of my coping toolkit – it was survival instinct more than anything else.

    Thank you for posting about Gillard and this abhorrent public “non-mom shaming” that’s occurring over in Australia. It’s ridiculous that a women who holds a political office can’t even be judged by her merits and accomplishments in office – it’s about how many babies she did or did not bring into this world. I find this offensive not even from an ALI perspective, but from a feminist one. We are more than moms and child-rearers!

    Author’s gravatar

    First off, thanks to you and Keiko for hosting this. Having both sides of the conversation is incredibly important and I commend you both for leading the charge.

    Disclosure is one of those hard decisions every ALIer will face. I fully respect someone’s decision to remain anonymous/private about infertility and loss. Both of them are painful topics and the decision to be open is a very personal one. There are very good arguments for the decision to “out” one’s self and it something I would never push someone to do. In addition, I fully understand resolving and moving forward. Not forgetting the experience, but also not dwelling on the time in the trenches. Though I will never forget this experience, I hope one day to resolve and be at peace. And I wish nothing less for anyone on this journey.

    For me, being out has allowed me freedom to be open with my emotions. I don’t hide things well and talking about this journey has allowed me to have some purpose from all of this. That said, I’ve been lucky to be supported in doing this. And my decisions are based on my life experience as well as how I view this journey.

    Author’s gravatar

    Disclosure/being open ? Does that come with more than a few free whacks to the people who quip “You could adopt” ” Don’t you like children? ” ” You could borrow *my* children ” etc. ?

    Author’s gravatar

    I have kicked myself many times for diving right into drugs and shots. I was sooo young. I wish we had been better guided. None of it worked. We stopped all medical intervention before I was even 30. My body was so broken from surgeries, shots, medicines, and an ectopic pregnancy.

    Author’s gravatar

    I also went down the allergy shot road and I can really relate to the concept of desensitization with regards to pregnancy announcements.

    Interestingly, I think the decision to leave TTC behind relates to the same question many mothers face about if they are “done”.

    The decision to walk away from conceiving or trying to conceive is deeply personal. That’s true for every woman, whether she was able to conceive or not.

    As a mother of five (three IVF) children, I’ve had to answer that question in very public forums and the question always comes with a side of judgment. What I’ve learned from that experience is never to judge someone else’s life choices, ESPECIALLY when it comes to family building.

    Someone else’s choice to walk away, regardless of where they are with their journey, is their choice and deserves respect and acknowledgment.

    Author’s gravatar

    I like the point you make about the end of medical technology. Yes, we can do a lot, but it doesn’t always work, and it’s important to know to what lengths each of us are willing to go. The spouse and I decided when we got our infertility diagnosis just how far in treatments we were willing to go, and I am glad we decided up front so we aren’t confronted with the ever-continuing struggle to reach for the end of medical extremes. How sad is it that young women are now being set up for being shamed for not freezing eggs if they experience infertility later in life. Ugh what a world.

    Thank you two for this great and thoughtful conversation. It’s really valuable.

    Author’s gravatar

    Thank you for joining in the conversation!

    Author’s gravatar

    It took me a veeeerrrrrry long time to set aside my judgmental tendencies. I still work hard every single day to keep an open mind.

    Author’s gravatar

    It took me a veeeerrrrrry long time to set aside my judgmental tendencies. I still work hard every single day to keep an open mind.

    Author’s gravatar

    I think it’s a really important point to highlight — ie, that not all infertility is curable, just like not every disease is curable. yet with infertility, society seems to always seek to blame and judge the victim: she must have waited too long. too focused on her career. not maternal. didn’t want it badly enough, etc.

    plus as a society we’re taught if you want something bad enough, work hard enough, you can achieve it. and then there’s always technology to help. no excuses. no failure. but we know that is just not reality.

    instead of judging women for their family building choices and outcomes, we need to raise awareness and cultivate understanding, as you do with this blog, your book, your voice.

    honestly one thing truly upsets me about my own story — that it could be viewed as a fantasy ending that we all know is just not common or realistic, that it perpetuates the myth of “just adopt” or “just relax” (aka just give up) and it will happen. it’s simply not true.

    Author’s gravatar

    One of the things that helped me was when someone told me, “I really salute you ‘coz you know when to stop.”

    These words came from a woman who’s had hysterectomy at a young age due to cancer and she’s adopted a son (and she wants to adopt more children in the future). I really appreciated (still do) her words so much. :-)

    Author’s gravatar

    The allergy shots analogy is perfect! Had them recommended to me but never went through with it. Claritin generally works pretty well for me. But there are some days when the pollen count is higher than usual and it’s harder to deal with, isn’t it?? ; )

    I think a lot of people assume that we dont’ have children because we don’t like them/didn’t want them. As with many things in life, I’m not sure why it has to be cast in such black & white terms. I am sure that if more people were asked why they decided to have children (and had that decision repeatedly questioned or dismissed), they would quickly become just as frustrated as we sometimes do.

    I love Lynn & Mary’s comments. Yes, it’s great that we have all these options to help build families today, but they come with a price (and I don’t just mean dollars), and they are not a sure thing. There should be no shame in walking away, if you feel it’s the right decision. People need to realize that families of two are families too.

    Author’s gravatar

    I love this: “I realized that like Salieri the embittered composer in the film Amadeus I needed not only to forgive others for their ignorance, I also had to accept my own physical shortcomings. I no more hate my uterus than I do my lungs. Each is faulty. But that doesn’t mean the rest of me doesn’t don’t add up to good stuff.”

    Thank you for another thought provoking post, with wonderful discussion here in the comment section. There is so much to chew on and I am grateful to you and Keiko for this salon this week.

    Author’s gravatar

    Very glad you dropped by to comment and share your perspective, Kathy. The participation of all women this week has helped close the gap between what has often been two divergent. misunderstood communities.

    Author’s gravatar

    I’m so glad you’re doing this forum! (I just saw it – now I have to go back and read all the prior entries!) For a couple of reasons. One, I started out in the IF blogosphere with a lot of other childless infertiles. There’s almost nobody left. Even when I keep up my blog (not always), the new mothers aren’t posting regularly; many of the posts they do write are things I will NOT read, and not because I’m being prickly (“Homemade Baby Formula” has its place as a topic, but I’m pretty sure I’m not the intended audience). The interaction is gone. I really enjoyed discussing these issues with other women who are going through them. There’s pretty much nobody left in my car of the train! Two, being left behind (boo hoo!) is actually becoming more bearable. Pamela, you predicted this would be true, but I thought I would never let go of the anger. It may (most days) have been downgraded to aggravation by now, though. I quit treatment earlier this year. I’ve been on depo since (for medical reasons – not because I wanted to eliminate all chance of conception so I’d stop worrying. Though I wonder whether that side effect hasn’t increased my peace of mind). It’s been just over six months. I feel like so much in my life has changed since then. Of course, other things have happened besides the infertility, but my resentment of those with kids has been so much less. I’ve gone from walking out of rooms where people were discussing their kids to silently remaining to engaging (even though it cost me) to engaging (and knowing that it doesn’t cost me). I ask questions about their lives, comment, express interest, even when they don’t about mine – that means I’m winning, doesn’t it? I’m winning at adulthood. That’s better than being a mother. And this community of women who’ve started before me to leave that beaten track of madly pursuing treatments has been an inspiration to me to know that I could get there, and madness was not the only end to the post-treatment childlessness path.

    And three – because this post is so thought-provoking. I run into the “pass or not pass” question all the time. Do I out myself and make an important point? Or keep my mouth shut and continue? I try to steer a middle course. I’ve always been made cranky by people who are activists for the sake of being activists (“Well, _I_ had cancer and you shouldn’t talk about that. Let me tell you…”). But the people for whom their experiences are a part of their lives they’re not using as marketing, but something that you’ll learn about quietly, modestly, as you get to know them – well, that I respect to no end. How to be one of those latter people? I am trying to develop the gift of subtlety; of making a point gently; of being a witness, not a spokesman. It’s a process ;).

    Sorry that (as usual!) I wrote a book. I get a little carried away by these discussions…

    Author’s gravatar

    Completely agree! There is nothing more fulfilling than a healthy and balanced exchange of ideas. I learn as much (or more) from those whose lives are different than mine. Furthermore, while I don’t always expect to people to understand my point of view or my life experience, the ego-centric part of me likes nothing better than knowing I’m being “heard.”

    Author’s gravatar

    What a great friend to recognize and acknowledge you this way.

    Author’s gravatar

    This is interesting. I’m about to write a post on this – the question of to pass or not to pass – because it came up on our holiday. I guess in brief though, I pass sometimes, and don’t others, and it all depends on me, and how I feel about the conversation, the attitude of the person I’m talking to, my energy (physical and emotional) levels, etc. To oblige us to talk about our infertility when/if we don’t want to is just as bad as obliging mothers to talk about their children when they don’t want to.

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