A Window Into the "Silent Disorder"

Note: At the end of this post you'll see an opportunity to share your thoughts about the "silent disorder" with a wider audience.

It's been a few weeks since I read the story "Blogging Infertility" in the journal The New Atlantis. This in-depth article (where you'll see lots of familiar names and blogs) takes a look at the infertility blogging community and some of the issues and challenges facing those of us who live with and write about this "silent disorder."

In a wide-ranging interview last December I shared many thoughts and experiences with the author of the piece.  I was reminded about one of the quotes that made it into the article during a dinner this week with work colleagues.

Among those seated at a long table were people newer to the organization. As with any meal that has an element of team-building to it there was lots of small talk exploring non-work topics. With most everyone on hand in their 40s or early 50s there were abundant stories about children and the challenges of parenting. During one awkward moment (awkward to me, anyway) a question came my way, lobbed over two or three others, aimed at involving me in a group discussion at the other end of the table.

"Pamela, you have, what two boys? or is it a boy and a girl? so you know what it's like to..."

I responded immediately, startled and confused by the question: "I don't have any children."

"But you have pictures on your desk of you and children..."

"They're my nieces and nephews..." I replied, attempting to clarify.

"Oh, so you don't have kids?"

"No, no kids," I said.

There was a minor pause before the person to my immediate left jumped in and the conversation continued without me.

I wanted very much to elaborate, to tell them that my husband I had spent a dozen years trying to conceive, that we'd pursued outside help at a research hospital, that we'd passed all of the tests with flying colors but flunked the final exam — more than once — but with the waiter bringing our entrees and the din of the restaurant and the buzz kill associated with my story, it just didn't seem appropriate then and there to open up my life to them. Sigh. Instead I was left feeling frustrated and closeted. And that's where my quote in the article comes into play.

The reporter explains the dilemma:

"...many never tell their family or friends that they’re undergoing treatment, or only tell them after treatment is over. 'It really is a double-edged sword,” Tsigdinos (me) says.  And, perversely, it’s a dilemma made more complicated by modern technology. 'I often wonder,' she says, 'Was it harder to be infertile in the Fifties [than today]? Because in the Fifties, at my age, people would say, ‘Gee, they couldn’t have children’ because birth control, the Pill, didn’t exist.... Today, there’s more ambiguity. People don’t know if you elected not to have children, if you couldn’t have children, if we made the ‘mistake’ of waiting too long."

And that ambiguity challenges me more and more often as I get older and live in the shadow of unsuccessful infertility treatments. I don't want to make a federal case about what my husband and I lived through, but I also hate the (usually wrong) assumptions and insensitivities that come with my circumstances. Why, I wonder, do we infertile folk feel it's necessary to go out of our way to protect others from the reality of our experiences, to suffer silently wishing we had a repertoire of our own child-related stories to tell.  (Well, we do actually have plenty of stories but they're more medical in nature.)

For a split second, as the entrees arrived, I considered telling it like it truly was but then what? Given the sensitive nature of the subject matter I had to weigh the risks of sharing my story with what might come next.  Would they find my honesty inappropriate? Would they resent me for trapping them at a table with a topic sure to make them uncomfortable? Would they feel an obligation to ask more questions and offer unsolicited advice? Or worse yet, would they make light of it, dismiss it and move on to a more congenial topic?

I certainly never aspired to be an infertility community "poster child," but I am beyond frustrated at living in a society that prefers people in my situation be silent, invisible. Earlier in the mixer part of the evening I had to smile pretty and nod quietly when the man directly across from me said, as he savored a glass of wine, "When my four children — all now gone from the nest — come back together for a family dinner, well, I'm just at my happiest — take me now! My kids, they're everything to me." And turning to a colleague who had just finished describing her two children, he asked "XXX, wouldn't you agree?"

Me? I had to excuse myself to go to the ladies room. The only trouble was I couldn't live in the stall all night.

The truth is people living with infertility don't like living in a vacuum. We flock to this blogging community to talk about those things which we don't have liberty to discuss in our day to day lives. But, many of the experiences we have deserve a fair and wider hearing.

That's why I can only hope that the article in The New Atlantis, the panel I helped initiate at the BlogHer conference this July (more on that in a later post), and a New York Times wellness series I've agreed to participate in will help pave the way to more open conversations. That in revealing the layers and dimensions and nuance associated with infertility we won't have to feel compelled to be silent (if we don't want to be).

Now, after this long-winded post comes a request. I'll be talking to the New York Times this week about my experience living with infertility in a fertile world. If there are specific points you would like to me highlight, I'm all ears. Please share your thoughts below.

 

What did you think of this article?




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Comments

  • 4/26/2008 12:16 PM Courtney wrote:
    What a great, and very true, post. I sometimes feel like I want to "educate" the public, especially my friends and family, on infertility, but then sometimes I just don't want to discuss it. While I don't want ppl to walk on eggshells around me, I wish for them to be a little more sensitive to how I might be feeling in a situation. For instance, my sister is all about knowing what I'm doing with my treatments, but then she turns the other direction by saying that she "hates me" b/c my blood work came out great and hers didn't (she got pregnant the first try on both of her kids--but she has a thyroid problem). I guess, I wish ppl could realize that this doesn't go away. We don't feel passionate one minute about it and change the next. I feel like sometimes my friends get tired of hearing about it. So, I turn to my blog-friends b/c they understand. I wish ppl would know that we hurt over IF every day, not just certain "days of the month." It affects us, not only physically, but more so emotionally. It affects the way we look at ourselves as an individual. I think I could go on and on about what ppl should know, but I've talked long enough. Sorry

    Oh yeah, make sure to point out, that ppl who have never dealt with infertility should never give unsolicited advice such as "just relax."

    Okay, I'm done now.
  • 4/26/2008 1:13 PM Journeywoman wrote:
    Please highlight that there isn't always a happy ending. So Flipping Often we see "surprise" babies in media to infertiles (Friends, ER) and more often than not it doesn't happen. Also putting IF under health care is big too.

    Good luck with the Times.
  • 4/26/2008 2:25 PM luna wrote:
    amen, sister. this is such an eloquent thoughtful post. there have been so many times when I've bit my tongue instead too. is it because it's too personal and private? is it because it's deemed inappropriate or makes people uncomfortable (esp. in the context of discussing their own kids)? is it because I'm afraid of judgment, or think others aren't worthy to judge unless they've walked in my shoes? it's all of these things.

    but you're so right. these issues deserve a broad hearing to raise awareness and facilitate understanding. thanks for doing so much.

    I know you'll represent well with the NYT. everything you discuss is important. the no happy ending issue is so tied up with the misconceptions about success of any path (e.g., IVF will work, adoption is easy).

    another thing I'd like to see is a change is the view that infertiles are merely selfish/self-absorbed egoists desperate to spawn (ergo, they should adopt all of those unwanted needy babies instead). there are so many problems with this (with every word really).

    the truth is, we want a biological tie to our child out of love, pure and simple. it's love to want to see my hub's eyes or hear my grandmother's laugh in our child... and I know a few bloggers they could interview about how "easy" adoption is (and clarify the misconception that all adopted babies are unwanted)...
  • 4/26/2008 4:17 PM Chrissy wrote:
    My biggest thing is that while insurance will cover pregnancy after pregnancy and whatever medical problem you might have, infertility is not considered important enough to cover. It's not considered a medical condition. It's "elective" for us to decide we want to bring children into the world even though we can't do it on our own, so we don't get coverage. I'm sitting here with my husband and we know what problems we have and how they could be remedied to help us conceive, but we don't have the money to pursue treatment and our insurance doesn't cover it. That's just one of many problems I face living with infertility in a fertile world.

    Good luck with the Times. I'm sure you will do wonderfully. Everything you talk about is so insightful. I just love reading your blogs. I can relate to so much of what is in them.

    Thanks for everything you do!
  • 4/26/2008 4:45 PM Lori wrote:
    I was cringing about your dinner party. I have been there.

    You handled yourself with grace, as you did with the New Atlantis and you will with the NYT.

    You go, girl.
  • 4/26/2008 4:49 PM Chrissy wrote:
    We spent 8 years TTC and obviously countless dollars and I encountered all the assvice imaginable. I did however not hesitate to tell people that we were trying everything medically possible to have a family, hoping to make them realize that the snide comments about how their kids were driving them crazy, were hurtful to a couple in the midst of infertility. Some of the time they got my message but more often than not, they offered me their kids etc etc. There is no pretty ending to being the couple that is without children in a world of couples with more kids than most of them should be allowed to parent. There is no way of explaining the kids that are subject to horrors of some families and couples that are coming to grips with having a life that does not include children. It affects your friendships and family relationships. I once described it to someone as it feeling like I was the only one not invited to the party that everyone was talking about.
  • 4/26/2008 5:29 PM Kami wrote:
    I like what Luna said about a biological tie. Most people don't need to think about it so it seems like no big deal. Case in point: My acupuncturist of 3 years recently confessed that she didn't understand why Brad and I didn't "just adopt" until she fell in love for the first time in her life. Even though she has raised two kids and doesn't want another, she still has a strong desire to make a child with the man she loves.

    I wish people understood that just because we were able to get pregnant, doesn't mean the wounds of the past are gone. I think this is especially true because we didn't get our mutually genetic child. I suspect it would have been true even if we did, but I will never know.

    Thanks for being a voice for the subfertile community.
  • 4/26/2008 6:18 PM Waiting Amy wrote:
    First, I know you will represent the community in thoughtful and important ways.
    I've been pretty open about treatment. Maybe because of my medical background. But it is still hard. Since my first child didn't require treatment, many people are confused that we needed treatment, and often don't seem to realize how significant our difficulties were. Secondary infertility has its own unique pains (no worse than others, just different). Now that IVF was finally successful for us, I'm surprised by how callus some can be -- I'm often told "well, you must be done now." While I am so very grateful for the child I have and the ones I'm praying arrive safely -- that doesn't mean that I am necessarily content with my family building.
    Ok, I'm just spewing off the top of my head late at night. Hope any of this is helpful. There are so many stigmas and mis-perceptions, I'm sure whatever you touch on will be a help.
  • 4/26/2008 6:25 PM M says wrote:
    What a fabulous, fabulous post.

    The commenters prior to me have covered everything I could possibly add, most particularly the 'surprise' pregnancy. If one more person tells me that they know someone who knew someone who gave up on ivf and *oops* suddenly became pregnant I'll go apeshit - seriously. I've taken to saying 'oh will that make my tubes grow back? Wow!! I never knew!!' Worth it just to see the mortification on their faces....
  • 4/26/2008 7:35 PM Dr Grumbles wrote:
    The ambiguity is maddening!

    My niece is the wallpaper on my laptop ... so my students see it every time I lecture using PowerPoint. That and my field of study (child development) lead them all to assume I am a mom. Correcting them made my heart hurt.

    By the way, you have been doing an excellent job speaking out about the suffering of the unintentionally childless.
  • 4/27/2008 12:31 AM Kirby wrote:
    I think the thing that hit me was that our family didn't really want to know. It was hard enough to tell them, but it never crossed my mind that they wouldn't be supportive. It was still a taboo subject, unlike other medical treatment, and you tell our openness was discouraged.
  • 4/27/2008 4:52 AM Geohde wrote:
    I'd never thought about the modern ambiguity in having no children- but you're right, people do tend to assume. Rightly, given the career kicking my currently precarious hard-earned pregnancy has been. And it's hurtful,

    J
  • 4/27/2008 7:47 AM Samantha wrote:
    Congrats on the interview with the NYT!

    One thing that I think would be interesting to highlight is that infertility and treatment is not a "one size fits all" proposition. Treatment choices can be bewildering, even if one has the resources to pay for everything. And going the adoption route feels just as bewildering. I guess I would want to stress that there is not a straight-line path that doctors simply tell you to do. Difficult decisions are left entirely in the patients' hands. Well, you probably get my point.
  • 4/27/2008 12:25 PM Deathstar wrote:
    I wish I could be there to see that wonderful panel with you all, but please could you talk about the toll infertility can have on the relationships in your life; in the workplace, friendships, marriage, inlaws, etc. I don't think most people even to understand the depth to which infertility can affect your life. I used to avoid walking certain routes in the park with my dog, so I didn't have to deal with playgrounds or children right after a BFN, the agonies of waiting in an ultrasound clinic with pictures of fetuses flashing on the TV screen, the conversations I could never be a part of, the constant fucking inquiries about when we were going to have children, the lack of sensitivity we encountered at every turn.
  • 4/27/2008 1:14 PM loribeth wrote:
    I stumbled onto the New Atlantis article about a week ago & thought it was great. I am sure you will represent us all marvelously with the NYT too (woohoo!!). Hopefully what winds up in print will accurately reflect what you tried to say.

    I've had similar experiences to your dinner party (I'm sure we all have...!). I don't discuss our infertility & loss much publicly either. (a) it's hard to talk freely about something so painful & private. (b) you hate to be the dark cloud that comes along & rains on everyone's parade, especially at an event like a dinner party or a shower where everyone is supposed to be having a good time. But yes, as someone else already said, it's like listening to everyone else talking (incessantly!!) about this really great party that you weren't invited to.

    Everyone who's commented so far has made some excellent points. I agree with Journeywoman that people need to realize that not everyone who gets diagnosed infertile ultimately winds up with a baby. And that, while it's not the end of the world (life does go on, & it can even be pretty good most of the time), infertility can still be a lingering source of pain & frustration & regret. I guess one thing I would love people to realize is that infertility & loss isn't something you "get over" (even if you ultimately do wind up with a baby); it's something that changes you forever & that you learn to live with. It's 10 years since our daughter was stillborn, 7 since we stopped treatment. I'm sure if people think about it at all, they assume we were sad but we've moved on with our lives -- but there's not a day that goes by that I don't think about it all & how different things might have been (and of course, in our pronatalist society, I'm constantly reminded...!!). I know many people who ultimately did become parents to living children, after struggling with infertility & loss, & many of them haven't forgotten either.

    I check out the Times online most days, & will be keeping my eyes open for your story!!
  • 4/27/2008 1:19 PM Alacrity wrote:
    PJ - sounds like an excruciating dinner.

    I guess that part of the problem is that people with infertility are often silent and unseen. It is a private issue, and includes a lot of sort of "taboo" topics, things too personal to discuss with a colleague or an acquaintance. Like you, when people corner me at a gathering and ask the dreaded question, I am not likely to go into why my answer is "no" but perhaps at some point, when it is less painful to think about, I will be able to craft a more detailed response which conveys more information.

    I think that another part of the problem is that people are not educated about infertility. They bump through life, blissfully unaware of it, until it happens to them or to someone who confides in them. And before that happens, they don't think for a minute about how an involuntarily childless person might feel about their casual remark or question.

    People are taught, as children some golden rules about what is polite and what is not. I just don't think that they are prepared for "people who don't have children and are heartbroken."

    I forget where I saw it, but someone circulated a piece on FF or IVFC translating all of the questions, comments, and assvice to the situation of a person suffering with paraplegia. The list sounded callous and inane - no one would say these things to a paraplegic, yet infertiles hear these things all the time. Just Friday a third work colleague told me how lucky I am to be childless.

    I just wish people were better prepared to be thoughtful and sensitive about this. If ten people are sitting around talking about their kids, and one person is silent, you don't have to ask - you can pretty much assume that they are not just holding out on you. It seems like a no brainer to me.

    I hope that the work you are doing will help to prevent some of this thoughtless behavior.
  • 4/27/2008 8:31 PM Ashley wrote:
    Well, because it's been an issue lately, I would like you to mention how common infertility is and the fact that dealing with pregnant women and newborns can be especially hurtful for women. I wish other people were more sensitive about infertility. I know for a fact that my two best friends will be trying soon, will probably be successful, and at least one will inadvertently rub it in my face. So, I'm a bit depressed about this (and other things now).

    In short: Increased sensitivity towards infertiles.
  • 4/28/2008 5:56 AM MLO wrote:
    Here is the thing, people are basically unwilling to learn about anything that doesn't directly affect them. Once upon a time, they would say, "There, but for the grace of God, go I," with the understanding that you are supposed to be compassionate.

    Compassion seems to be something absent in our world today. It is all about self instead of understanding. Infertility is hard because it is something that causes fear and anger in people. The more responses I read about it in the general press, the more convinced I become that it is something that people want to avoid at all costs.

    I think your quotes on technology being perceived as "the answer" are spot on. Most people never have to deal with the issues of DE/DS or surrogacy - even within the IF sphere. Those are incredibly personal decisions that no one has the right to question your decision to pursue or not pursue those options.

    I think that I am going to scream the next time I hear someone say "Just Adopt" - hell, it even came up on a knitting board! And, despite patiently explaining that there is no such thing as "Just Adopt" and all the issues surrounding adoption, people still refuse to get it.

    Family-building is extremely complex. And, throw in the pain of infertility and it just makes it more so.

    My post may be a bit rambling, but hopefully, I am making some kind of sense?
  • 4/28/2008 1:25 PM peesticksandstones wrote:
    PJ, you are totally my hero!

    Here are the things I wish came up for discussion more, so perhaps some change can start to happen:

    - The extreme financial sacrifices so many couples have to make to build a family... both through treatments without insurance and through adoption. I'd love for the "just adopt" crowd to get a gander at the itemized pricelist for an agency adoption!

    - The stereotype that women who use IF treatment are all high-powered, "career" women who are all "to blame" for waiting "too long," etc. I don't think people even know there are diseases like endo, PCOS, etc that can compromise fertility in women of any age.

    -Further to that point, I often hear "pro-choice" women who consider themselves feminist, etc, harshly judge women who use IF treatment as "selfish," especially when older, etc. Shouldn't a woman's right to choose what she does with her body extend to creating life, too? I'm confused.
  • 4/28/2008 3:03 PM Ms Planner wrote:
    Coming your way via Weebles Wobblog. So glad to have you an amazing spokesperson for IF. Thank you for your efforts.

    I recently read a popular book on dealing with children's sleep habits (we are finally expecting after infertility and miscarriage). In it, a new father who has a sleepless baby goes on and on about how inadequate his friends and family made him and his wife feel. All of their "helpful" comments, assvice and stories of their own successful child slumbering skills really had him down. What adult-with-children can't relate to the feeling of unsolicited parenting help and advice in times of struggle making you feel like less of a parent?

    THAT is exactly what it feels like to infertile couples when their friends and families try to "help" with the situation. It makes you angry and it makes you feel inadequate. The comments are rarely helpful.

    For me, the story in the sleep book is the closest parallel I've found in how an infertile couple might get a fertile couple to understand how hurtful the child-centric dinner party conversations and unsolicited advice really can be.

    We were always open about our struggles and endured a lot not-so-helpful comments, advice, etc. I tried to remember that the commenter's heart was in the right place even if his or her actions belied it. It was (is) important to us to be open about infertility. The more that people speak up about it, the more the issue gets out into the open. Discourse is a good thing. It begets awareness.

    As to the bathroom stall during the business dinner. Oh sister. Been there. Done that. Sorry it happened to you, too.
  • 4/28/2008 4:22 PM Rachel wrote:
    I cringe to think of you at that table.

    For the NYTimes:
    - Social etiquette needs an update. It should be common knowledge that asking direct questions about whether people have children and expecting X or Y, but certainly not Z and having no clue as to how to respond when it's Z... is really bad manners. Also bad: women who assume that because they're walking with a baby carriage, they get special rights such as cutting in front of you in line (it's happened to me, more than once), and that they get first rights to parking spaces. I swear, I almost ran one of them over once.

    - Education. Feminists need to get a grip (I'm thinking of the scandal over the billboards that went up about 7 years ago, getting the word out about declining fertility), and the word needs to be spread, far and wide, that women need to be making earlier decisions about having children.

    - Decent Healthcare Coverage

    - The reality of ART clinics and the IVF world. It doesn't always work and you can't 'just' have an IVF. Or adopt for that matter. Ditto for DE/DS.

    Very much looking forward to reading THAT article.
  • 4/28/2008 4:41 PM Sara wrote:
    I think most issues have been covered- one of the big ones with my hubby and me was the insurance one- my would pay for the pregnancy- most complications- but not all especially if they were found to be related to IF treatment- and they would pay for viagra but not for any IF treatments- they would even pay for a tubal or vasectomy but not a reversal- go figure.
    And I agree with just about everyone- society looks at fertiles and infertiles very differently- the media even looks at us differently- I have seen so many articles stating that we infertiles are selfish going to such extremes and spending so much money on all of the treatments and the things that we willing do to our bodies. IF education seriously needs to be done- I know that many of us give up many basic things not just luxuries to be able to afford IF treatments and the things that we do to our bodies- I wouldn't necessarily say it is so much that we willing do them as we gather up the strength and courage to do them because we hope that in the end after torturing ourselves we will have something beautiful to show for everything that put ourselves through.
    My husband and I haven't told most of our family about what we have been through- only our close friends and our parents know our struggles and about our losses- why do we stay quiet- I think someone else said it- because we don't want to be the rain cloud- and I don't know how my family would react other than the typical- well 'you just need to relax' or 'why don't you just adopt'- which we all know- if it were that easy we wouldn't have to have this community or be having this discussion in the first place.
    I know that you will represent us all wonderfully PJ- you always do. Sorry that I rambled on so much
  • 4/28/2008 5:57 PM chicklet wrote:
    Wow, you're just awesome. Seriously, awesome. All the effort and papers and press - you rock

    For me, what I'd like noted, is that we're not all baby-crazy lunatics. A lot or most of us lead very normal lives and many people wouldn't even know we wanted kids if they didn't know us well. We're the people next door, the woman over the cubicle, maybe even your best friend. I have real disdain for the 'desperate for a baby' label I'm given, when I'm not desperate for a baby, I'm just very much wanting to do what others do so easily. I want a family around me, and kids who laugh like my husband.
  • 4/29/2008 10:37 AM Louise wrote:
    Wow, the NYT, huh? That is amazing!! I know you will be a star. What is the premise of the interview, and who else will be interviewed? Also might help you to google the name of the writer to see his or her "writing style." Let me know if I can help! (former PR person here)
  • 4/29/2008 3:15 PM Lisa wrote:
    I will blame my stims (and current stress from trying to juggle work obligations around the IVF cycle business) for not being able to add much to the discussion right this moment, but I wanted to spit out a thank-you for talking about the Silence. It really is deafening sometimes, isn't it?
  • 4/29/2008 6:59 PM Bea wrote:
    I was waiting for a review of the article from someone.

    I think the main thing is to highlight the fact that infertile people are people too! This undercurrent of how life is meaningless without children is bullshit.

    At the same time, this isn't an excuse to minimise the loss - don't worry about it, you can always have a great career/etc. The loss is huge.

    I guess it would be more accurate to say I don't like seeing childless *people* counted for less. They may have chosen it that way, or the circumstance may have been thrust upon them. Even if the choice was easy for them and they are satisfied with it, they should be respected as equals. This doesn't mean you can't acknowledge what a great loss some childless people have suffered.

    Bea
  • 4/30/2008 5:41 AM JJ wrote:
    Not downplaying the feelings you had as a result of the dinner conversation, but to me you always seem to handle yourself with such grace and poise. Your mention of hiding in the bathroom stall made me count the number of times I have done that recently...I should carry a sharpie with me from now on and write, dial 1-800-call-JJ for a real good time...

    And, I'm not stalking you, I promise=) Since Ive had recent issues with email eating spam, just wanted to play it safe and let you know that I did send you an email yesterday-
  • 4/30/2008 7:04 AM Ms Heathen wrote:
    Thank you so much for this wonderful post!

    As you say, society expects those struggling with infertility to remain silent and invisible. I've found that, if I tell people that we are unable to conceive, they are at once strangely fascinated, and ask a series of intrusive questions, but then don't actually want to hear the answers: I always have the impression that they are worried that infertility may be contagious.

    I hope that your interview with the NYT goes well. I want to second the many excellent comments others have already made with regard to particular issues to bring up. My own particular bugbear is with those who assume that a happy ending is somehow guaranteed: that IVF will definitely work, and, if it doesn't, then we can all 'just adopt'.

    I know that you say you never set out to be a spokeswoman for our community, but I think you're doing a damn good job!
  • 4/30/2008 8:41 AM annacyclopedia wrote:
    I'm late in commenting here cause I was saving it up until I collected my thoughts and then time just went by. But I still feel the need to respond to what is a totally amazing post, and also the great article (thanks so much for sharing that - it's so nice to read a balanced and truthful account of IF in the media.) You really are a hero of our community, PJ - thank you so much for speaking up for us.

    I don't have too much to add to the really thoughtful comments above, but one of the the things that has been coming up for me lately has been the metaphorical process of giving birth to myself. I've been stripped down and made new in this journey, I've become utterly vulnerable, and I feel as though I've been forced to see the world differently. Maybe this is my way to try to find meaning in everything, and perhaps it's grasping a bit too much. But I am a different person than I was before. In some ways, it's because I have had to truly confront and accept that things don't always go as I planned or as I wished. There is disappointment in life, and I have to live with that. I'm going to have to live with the decisions I've made along the way, and if I'm lucky enough to have children, they are going to have to live with those decisions, too. I can be somewhat at peace, reminding myself that things are as they are. But I'll never have the kind of optimism that some people have that anything is possible, that it will all work out in the end (of course it does, it's just sometimes massively devastating, which is one outcome that is often overlooked by those who've never really been dealt the kind of disappointment one has to face in IF.)

    In dealing with IF, I have had to take responsibility for my life and my choices in a deeper way than I ever had before. And because we live in a society where so few seem to take true responsibility for themselves and for those around them, it is very lonely. We don't live in a world that really embraces soul-searching, and so much of this journey has been about soul-searching for me. I think a lot of the assvice and glib responses to IF (like "just adopt" or "it wasn't meant to be") are because people are so uncomfortable with pain and the possibility of pain with no resolution. They think it's fixable - it has to be, right, with enough money and technology and prayer and intention and positive thinking?!

    The truth is that it's not fixable. Even though we are strong enough to live through it, to re-create ourselves, to give birth to new lives for ourselves. We can't take away the pain. All we can do is transform in response to it.

    Which makes us some seriously awesome, counter-cultural, ass-kickin' bitches. Even if we do occasionally end up in the ladies room during dinner.
    1. 4/30/2008 11:40 AM loribeth wrote:
      Anna, this is an amazing response to PJ's amazing post. I love every word of it, & it's all so true. Can I hang out in the ladies' room with you?? ; )
    2. 5/1/2008 9:34 AM shinejil wrote:
      Yes, Anna! This is it, especially the glib advice part. I think if there's one thing a fertile person can do, it's say, I'm sorry instead of trying to fix things or blow us off. I don't care what you think; I have several medical pros taking care of my health, thanks.

      I'd also like to ditto what has been said above (by peesticksandstones?) about the fact that we're not all baby-crazed. My husband and I would like a family. Medical technology provides a way for us to attempt to do that when for some cryptic reason my body refuses to do it without this help. Plenty of people waste their money on frivolous, stupid, harmful things; why can't we decide to spend it on medical treatment?

      Finally, anna hit the nail on the head when she noted that IF readjusts your assumptions about everything happening for a reason and getting what you deserve. That I can't conceive and you can is random. Completely, utterly random and mysterious, just like life, when you're not looking at it through delusional lenses.
  • 4/30/2008 11:44 AM Carol wrote:
    I am a "lurker" here, so to speak and love your blog. My husband and I just found out that we cannot conceive without "help." We are currently struggling with whether or not we want to undergo fertility treatments and I guess the point I would like to make (besides all the other great points that have been made already) is that friends (I haven't let my family in on this "secret") need to learn to accept the fact that I may not ever have a child. I had a friend tell me that fertility treatments aren't that expensive and I should just "do it" regardless of how hubby and I felt about it.

    And don't get me started on the Urban Legend pregnancies...... you know, the friend's cousin's dog's neighbor..... Really?

    Anyway, thank you - for your blog and for trying to open up our world. We all live it, in sometimes very different versions, but live it just the same.
  • 4/30/2008 12:01 PM zhl wrote:
    Ouch, just reading about that dinner party hurts. Thank you for contributing to the article. I think you did a good job of presenting the issues.

    For the most part I no longer share my infertility with friends or family. It's just gone on too long. I am sick of talking about it with them as they are, I think, of hearing it. I'm also just not one in general for bearing my soul.

    But having a blog and bearing my soul (and more) to complete strangers has been the greatest salve throughout this process. Imagine that.
  • 5/5/2008 5:26 AM Iota wrote:
    I think that sometimes, especially in a situation such as your evening, it's difficult to respond when someone says they don't have children. You don't want to be insensitive and make light of it, but you don't want to put them on the spot and make it awkward for them if they don't want to talk about such a personal issue. I think most people assume that the latter is worse than the former, and so err on the side of being dismissive. That does reinforce the silence.

    I once read a comment on this blog from someone who thought that in the past, you could hide behind a simple "I'm sorry", which was formulaic, but gave everyone a way of moving the conversation on without awkwardness. The commenter felt that these days that response was inappropriate, as it assumed that everyone wants kids, and you might well be talking to someone who had decided not to have kids and was happy with their decision. (Of course the same could well have been true in a previous generation, but assumptions were so different.)
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