Casting off Chains of Infertility: Fertility Diary, The Life of Pi and Search for Peace

Each of us who confronts infertility has no idea where it will take us.

We launch into turbulent seas unaware of when or if we will encounter calm water or be delivered into a safe harbor.

Certain contributing reproductive conditions are more easily treated than others and some individuals have more disposal income than others to gamble on advanced and risky procedures. Read any infertility blog and you’ll get a window into how prolonged disappointment and loss combine to color decision-making, fray relationships, challenge principles and, at its worst, weaken our spirit. Trauma soon follows. With the advent of blogs, weary companions now gather to share and puzzle out their next moves.

I began following one high-profile series, The Fertility Diary, featured on The New York Times Motherlode blog after contributor Amy Klein shared her response to the Selling the Fantasy of Fertility op-ed (co-authored by Miriam Zoll and me). Since September I’ve read with curiosity how Ms. Klein’s thinking and behavior continue to evolve with each development in her infertility journey. Her latest asks the question: “How Much Would You Pay to Have a Baby?”

While the question is couched in financial terms, there are other significant costs associated with pursuing treatment (ranging from emotional tolls to long-term health concerns). On the emotional front, I remember when I was where she is now. Like her, I once pacified my fears and blindly pushed forward with the next procedure envisioning myself in the lucky minority of those who succeed with treatment against the odds. One big difference in our situations: I was without the benefit of the Internet to offer a reality check. All I had were women’s magazine articles and popular media stories affirming that if I simply kept at it, I would magically succeed. There was no counterpoint.

While I believed I was an informed patient, it was only years later that I learned how haphazard reproductive medicine truly is and how much of today’s reproductive treatments are still a mystery without the controls found in other clinical procedures. As former ASRM ethics committee member George Annas shared in a PBS Frontline interview:

There hasn’t been what you have in cancer, for example, or other major diseases where you have long periods of people doing experimentation, looking at protocol, developing protocols. Finally, finding something that works and then standardizing it, so other physicians can follow it. Nothing like that in assisted reproduction. Basically, it’s individual. It’s developing their own techniques and then marketing them.

Ten years have passed since I went cold turkey and kicked my addiction and began to move forward with my life. Today I’m wiser about the reality of failure, heartbreak and money lost forever in the pursuit of a dream that hundreds of for-profit clinicians were willing to sell as long as we were willing to write checks.

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Furthermore, I also see in hindsight the glaring lack of readily available independent mental health services needed to help couples review and assess what is in their best interests. Rather than treat the whole person, infertility patients are treated as clinical specimens or bank accounts moved through a system of increasingly complex and expensive treatments divorced from the emotional juggernaut that accompanies diagnosis and treatment.

Looking back we felt a sense of urgency and single-mindedness coupled with emotional isolation  that was daunting. We mustered everything within our grasp to put an end to infertility even when the odds were heavily stacked against us. Perhaps most cruelly, prolonged fertility treatments and interventions stole our innocence, caused our hearts to grow heavy and dominated our life.

Physical mystery + emotional disengagement met the added challenge of social impatience and expectations for a speedy resolution.

Routinely reminded that society was indifferent or ignorant of the trauma we experienced and tortured by the conventional wisdom that we weren’t trying hard enough, week by week and month by month, the chains that bound us to our next expensive fertility fix began to chafe. At some point we awakened to the fact that the pursuit of fertility treatment had become its own insidious demon, one that imprisoned not only our bodies but our hearts and our souls.

cast off one's chainsThe prison metaphor came to light on the day the courageous and inspiring Nelson Mandela passed away. News reports reflected on his life and the legacy many of his ideas and quotes circulated. His strength of spirit and capacity to forgive will forever motivate us to become better people.

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The next day I awoke to find an email from the Director of the Infertility Awareness Association of South Africa. In it she shared a blog post from Mash, a support forum member, who compared the infertility journey contained in Silent Sorority to the ideas contained in The Life of Pi.

In the mother-centric world we live in, the author is kind of like Pi, alone on a life raft and left to deal with her own inner struggle.

As those of us who have been imprisoned by the pursuit of fertility know fear and its marauding attendants anger and bitterness render us incapable of finding inner peace. Mash observed of my story:

In the end, when her inner torment is at it’s worst, well there it is, the shore. She starts to find a way of existing and being in a world that accepts only parenthood as a meaningful purpose in life.

Advancing this idea, she writes:

The only real freedom … is the one that Pi found as he surrendered his entire being … in the moment of his life when there was no water, no food, no hope — and the tiger’s head [the metaphor for his demon] — was in his lap. [Pi] was facing and acknowledging his mortality, his deepest darkest fear. Looking it in the eye and being at peace with it. That’s what it takes.

 

So true. I remember the sense of sheer exhaustion that resulted in battling my metaphorical tiger and the torment it inflicted. Once I finally surrendered my chronic frustration and angst at living a life different than the one I had hoped for and envisioned, accepted my body for not functioning on demand, and forgave those who inadvertently wounded me with their infertility insensitivity, I reached a state of peace. I embraced the life I have and became committed to seeking truth and transparency about the limits of Mother Nature and science.

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I respect the need to understand and responsibly combat the underlying conditions that lead to infertility. In fact, providing more education and screening about biology’s limits early will allow young women and men to work up a plan and make informed decisions before reaching crisis stage.

I also know the freedom and peace that comes with accepting that which will never be so that life can move forward.

Fertility medicine can’t cure infertility for all. Not all women and men possess the capacity to conceive regardless of how hard they try, and some simply time out.  There is no shame in that. Nor is one life path of greater value than another. The sooner these truths permeate society, the easier it will be for future generations confronting infertility to release their demons and get on with the business of life rather than remain in the business of expanding revenue for fertility clinics selling futile, expensive cycles.

In this year-end time of reflection, I wish Amy Klein and all who find themselves in the grip of infertility’s worst struggles the strength to find wholeness and the priceless gift of peace.

As always, welcome your thoughts. How, dear readers, are your lives unfolding?

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37 thoughts on “Casting off Chains of Infertility: Fertility Diary, The Life of Pi and Search for Peace

  1. Interesting post, but I had a different experience with the fertility industry — first in the mid-late 1990s, and then in the early 2000s.

    The fertility industry was pretty straightforward in its communications, its treatment, the odds conveyed, and the risks of the drugs. Both in NY and Rhode Island, I was treated with respect. I felt sorry for the nurses and medical staff who had to deal with patients’ hopes and discomfort.

    No one ever lied to me about the odds, I did my research, read the fine print on cancer risks — “undetermined” — I even took a job at a company for their generous fertility benefit.

    Anyone who’s had a serious illness, or an unpredictable chronic one, as I do, where most treatments are experimental and therefore not covered by insurance, will have had a far worse experience with the medical community.

    I also think that anyone who can get themselves to a fertility clinic can also get themselves to a therapist. The second time I did treatments, my clinic provided one mandatory counseling session where the social worker in no uncertain terms warned us that with a 4% success rate predicted, we’d better brace ourselves for bad news. I am grateful for that. I was also in regular therapy and that helped tremendously.

    Way back, I hesitated to do the most successful and more advanced treatment, IVF, when I was 37, though my doctor, David Barad, communicated very clearly that within my $20,000 employer’s insurance budget, this was my best shot, and that there was no time to waste.

    I rejected IVF initially on religious grounds — I was also dealing with my chronic illness that ALL fertility treatments worsened, and had to stop.

    I think the emphasis should be taken off of blaming the fertility industry and focusing on adjusting the message the media, and women’s interest groups that equate feminism with older motherhood, are sending. Older motherhood is the real culprit in what looks like an infertility crisis.

    As Miriam Zoll reported in her book, The National Organization for Women protested a medical organization’s attempt to educate women on their real fertility in the early 2000s, on the grounds that it was stigmatizing older mothers. NOW and More magazine, which has run countless pieces celebrating older mothers, and none at all on childless women of any stripe, are more to blame for your disillusionment than doctors.

    For starters, one fact that needs to be in the forefront is that women are most fertile in their twenties, specifically, their early twenties. Few professional women are in a position to reproduce at this age. This is a societal issue, not a medical one. This is the elephant in the living room of all fertility discussions. When we use the term “infertility” for those who try to start families even in their early thirties — you are really on the spectrum of normal if you can’t conceive easily.

    I deal with a chronic illness — I don’t like broadcasting that to the world at every turn. If I did not go off birth control until I was 36, I was actually on the spectrum of normal for not conceiving. I’d be very careful in brandishing the infertility label if what you’re dealing with is people who simply started trying too late.

    Despite my lack of success in outcome — I had a good experience with the fertility industry.

    1. Thanks for reading and commenting, Christina. Count yourself among the lucky who had a doctor and nursing staff with good bedside manner and who leveled with you. I’ve had scores of emails and comments from those who weren’t so fortunate.

      I heartily agree that more accurate media reporting and cooperation from women’s interest groups are essential to better and more broad-based education. While the ASRM made an attempt in 2002 to educate on the decline of fertility associated with aging their approach didn’t go over well. Rather than regroup and try again with a better approach, the fertility industry moved in the direction of advertising with cherubic baby images and engaged in selling riskier treatments without the longitudinal health studies.

      As I stated up front there are many factors that contribute to the inability to conceive. The lack of understanding about how and why fertility dramatically declines with age raises questions about why the medical establishment and education system don’t do a better job of informing society about the realities of biology.

      Clinics that offer mammograms and breast cancer screening focus on the healthy outcomes of early screening, they don’t advertise great looking breasts. If fertility clinics did more to advertise that the greatest success for treatment lies with its youngest patients there would be less ignorance overall.

      As for mental health and counseling coupled with treatment, I was among the 30% that fit in the “unexplained category.”

      This is among the most confounding emotionally as the lack of clear diagnosis keeps couples in a perpetual state of limbo. The first five doctors I visited (starting at 29) did nothing to address the distress associated with the infertility experience nor were they able to devise what was preventing conception and a viable pregnancy. They simply treated us like a lab experiment pushing us through more invasive diagnostics and interventions — as though our bodies were divorced from our head/hearts. The sixth doctor, after a particularly distressful IVF outcome, arranged one visit with a clinic counselor who proceeded to advise us to find our own mental health advisor (in other words “don’t let the door hit you on the way out”). The seventh RE team affiliated with another large, well-known clinic dropped us like a rock when, exasperated and at our wits end after still more unclear diagnostics, we said we may not be ready to move forward with a riskier form of IVF. From the minute our procedure was cancelled we never heard from the clinic again. Not exactly a stellar example Hippocratic Oath of “do no harm.”

      When asking people to pay up front for unknown outcomes and risky procedures and not have a mechanism for treating the whole person — especially when studies have demonstrated that couples are traumatized by the RE process — is simply reprehensible.

      Fortunately, groups are beginning to coalesce around responsible medicine. Read more: http://www.dailymail.co.uk/health/article-195627/Expert-warns-IVF-timebomb.html#ixzz2mzzjGt7C

      Excerpt: “Josephine Quintavalle, of the campaign group Comment on Reproductive Ethics, said: “For once I find myself agreeing with Lord Winston. It is good that someone-of his ilk has come clean at last about what is basically a mass experiment on infertile people.”

      I’d love to move closer to everyone having a good experience around the realities of reproduction from beginning to end (including physical, emotional and social). A pipe dream perhaps, but a worthy one.

      1. I’m not sure what your initially unexplained infertility had to do with your not seeking mental health counseling on your own?

        I think Irina Vodar in her Breaking the Taboo blog interviewed a doctor who explained how medical professionals are very, very focused on outcome — as scientists are trained to be, not on hand-holding. She is working to educate medical students on the issue, which is great news.

        I’m from NY where no one balks at psychological counseling. I don’t see your clinic suggesting you find your own mental health counselor as a bum-rush. Counseling is tricky, and individual chemistry is important, the wrong, clinic-provided counselor could be worse the no counselor. You are better served with finding your own than whatever the clinic has to offer.

        Many chronic illnesses, like AIDS, as well as my own, have had the same “wild west” kinds of research/treatments. I’ve tried all kinds of drugs, and quickly got off the ones that made me worse.

        Re: advertising. It is jarring to see that image of a baby, when so many “customers” will walk away empty handed. That’s advertising. A plastic surgeon would advertise with great looking breasts, the cancer-prevention industry advertises with “peace of mind.”

        People desperate for kids (me included) — don’t have time to wait for studies. It’s just the way things are. It doesn’t take a genius to guess that Elizabeth Edwards’ cancer was spurred by huge influxes of artificial hormones, post-menopause. I can do the Math on that. What bothers me is that no journalists are willing to go near that issue, and presenting it as a warning to women.

        But the fact is, the desire to reproduce is so fundamental in some people, they would gladly sacrifice their own life to continue the human race.

        1. Good discussion, Christina. Let me elaborate on your comment and questions.

          We’re in agreement on many points:
          – Media can provide a great service by reporting the full story on reproductive medicine.
          – Medical schools can turn out much better doctors by educating about the need to care for the *full* patient, not treating people like specimens.
          – People who seek help getting pregnant … well we’re all different in how we cope and resolution is not one-size fits all.

          In the 21 years since I had my first diagnostic test to try to figure out why I wasn’t getting pregnant, a wealth of studies — most in the past decade — have demonstrated that the emotional response to an infertility diagnosis ranks up there with the cancer. I didn’t know I would need mental health counseling until I was well into the belly of the beast … not having been through med school, silly me, I trusted that my doctors would know more than me.

          It’s one thing to offer patients a chart: HFEA IVF Results
          It’s another to let them know that as the outgoing head of the UK’s Human Fertilisation and Embyrology Authority says: “The world of IVF is a market, a market in hope. Those who enter it deserve to be fully informed of its potential to deliver grief and a sense of failure, as well as success.”

          My motivation in writing about what has and hasn’t changed in 20 years is to highlight the need for greater knowledge and progress so that the next generation benefits from lessons learned — EARLY — not when they’re at their wits end. The past seven years of speaking out has demonstrated that highlighting where the deficiencies lie in treatment and what happens when patients are abandoned when they run out of money or are too traumatized or left with new health concerns — and openly discussing the hairiness of infertility has helped prompt new scrutiny and helped women and men feel less isolated and alienated.

          After 35 years, we should be well past the “wild west” of treatments and into more responsible medicine. More than a few studies discuss the emotional impact so there is no excuse for not bringing the physical and emotional together in treatment. These studies for instance:

          Psychological aspects of infertility – British Journal of Medical Practitioners
          http://www.bjmp.org/content/psychological-aspects-infertility
          “Women trying to conceive often have clinical depression rates similar to women who have heart disease or cancer.”

          Failed IVF attempt tied to depression, anxiety
          http://mobile.reuters.com/article/idUSBRE85Q19120120627?irpc=932

          (article excerpt:) According to UCSF Clinical Psychologist Lauri Pasch, infertility practices should do more to help women with mental health symptoms – though not because it would be expected to improve their odds of IVF success.
          “Psychological interventions need to be geared toward helping women feel better, and not toward increasing their chances of pregnancy,” Pasch said.
          Some larger, university-linked infertility centers have on-site services for women who want mental health counseling. But most practices do not, Pasch said.”

          I remain disappointed that the growth in the number of fertility clinics has not had an accompanying growth in how patients are treated over all. Let’s imagine if each fertility clinic set aside 1% of the cost of an IVF cycle:
          – to fund mental health counseling with those expert in the topic (counseling costs $$ that many tapped out from paying for physical treatment lack) or
          – a fund for truth in reporting on failure rates and longitudinal health studies.

          Finally, sex education. I truly believe that had my junior high school human sexuality 101 class included a lesson not just in how babies are made but in what happens when babies aren’t made, I would have had an inkling that infertility was prevalent in one in six couples (per the Reuters story below). As it was I read a brochure about infertility in the doctor’s office — when I was 30.

          Almost one in six couples face infertility: study
          http://www.reuters.com/article/2013/01/11/us-couples-infertility-idUSBRE90A13Y20130111

          I’m really hoping things have changed for those in their 20s and 30s. Had someone pulled me aside in my first ob-gyn fertility workup said:

          “Here’s the spectrum of potential inhibitors. We think it’s important for you to understand the infertility experience has the potential to turn your life upside down. Here are some resources to help you because we’ve learned it’s important to be prepared for the fact that medicine might NOT work.”

          I can’t help but wonder if (for the $$ we were spending) some patient education that included hearing about those for whom it DIDN’T work might have better prepared us, rather than, “come back again and let’s have another go…”

          One last link:

          Fertility treatments may put women at risk for PTSD symptoms, study suggests
          http://www.nbcnews.com/health/fertility-treatments-may-put-women-risk-ptsd-symptoms-study-suggests-931257

          As for advertising, the last time I checked babies were not consumer goods but if you dropped in from outer space and saw the billboard and fertility clinic banner ads, you’d sure find it easy to come to that conclusion.

          1. Maria

            Well said. I can tell you from personal experience, when my husband had a heart attack this summer and my parents had open heart surgery, they were all told by their doctors to anticipate depression, were given a booklet on what to expect emotionally, and were counseled on how to deal with it when they got home from the hospital. Of course this same information should be given to people receiving treatment for infertility. Instead, we get judgment for waiting too long, being too old, not trying hard enough. It is hard enough to receive these comments from people who have not been through infertility, it is worse coming from someone who has actually been through it. You showed exceptional restraint responding to this poster. Thank you for the information and continuing to maintain this blog for women who need it and do seek help. I know it must be hard when you get these type of judgmental comments.

          2. What a great contrast in medical experiences. I remember the various surgeries we went through and the only instructions we ever got centered on physical pain management. Not a word about how the experience might affect us otherwise. Beautifully said, Maria.

    2. IrisD

      I have actually had a problem with the easy assumption that I did not have children because I was a “career” woman, because I waited too long, because I put getting a PhD ahead of making a family. I have basically been told, sometimes indirectly, sometimes quite outright, that it is basically my fault. In reality, we had male factor infertility, which it is often not may place to point out to those people who presume it is “my fault”. It would have had little impact if I was 20. I am not saying that postponing motherhood is not a factor. It absolutely is, and yet the weird thing is that in my own experience with my close circle of friends, quite a few of them have had children: when trying for the first time at 40, without planning it at 43, or just simply at 43, and 42.

      1. You raise a great point, Iris, about the additional challenge of misplaced assumptions — and the range across which fertility extends for different people. It only adds to the mystery and making sense of contributing complexity.

    3. Mrs G

      Christina,
      I do think that we must make a distinction here, between women who have fertility issues and women who have difficulties to conceive because of age.
      At the risk of sounding unsympathetic, the latter group has no fertility issues. They simply have organized their life (and I accept that part is due to bad luck, no one has 100% control of their life) in a non conception-friendly manner.
      Then there is the former group (and I place myself among them) for whom the age factor is less important. I’ve fertility issues, but (without giving too many details) I would say that my fertility is better now than a few years ago. This does not mean I’ll get pregnant (probably not), simply that my odds are better now than a few years ago.
      So, yes, I resent people a bit when they place themselves into the infertility box, when they are simply too old to have children.

      1. Mrs G

        Oh, and we should really stop to sell the fantasy of “having it all” or “you can achieve what you want” or “unlimited potential” and so on. These are very American ideas, but they are exported abroad too.
        While there might be a small minority of people who have it all, the vast majority hasn’t, so we have to develop realistic expectations. Positive thinking stretched to a certain extent becomes delusional.
        Unfortunately too often, realistic expectations/reality check are branded as “self-esteem crushing”, “victimization”, “patriarchy”, “anti-women” and so on.
        Unfortunately the fertility industry is very good in highlighting the positive outcomes and not the negative ones. after all, they have to make a profit. And the media chime in http://www.theguardian.com/lifeandstyle/2013/dec/14/glad-froze-my-eggs-childless-baby

      2. Janet

        If you are saying that AGE (regardless of reason for delayed treatment) career or otherwise.. Shouldn’t be considered in the “infertile Description” I believe that to be incorrect. as the graph above would not state the odds for a woman over 35 or 40 to 45 if not included in the odds of fertility category. We are still capable of conceiving, with less chance if success. Our issues are just that,,, ” age related” and sometimes more than that. I am in that category, and regardless of age or reasons to have not started at a younger age, (many of us having tried for many years prior to entering the age related infertility status quo… We have the same feelings and heartaches when it comes to infertility as any younger woman without age related issues. The desire to be a mother doesn’t change just because you get older, and new obstacles present themselves.

  2. Oh wow, blushing in the corner here! Thank you so much for reading my post, I’m so happy you liked it!

    1. I love the Life of Pi comparison. When we walk away from treatments (either by choice or necessity), we do face our fear, and acknowledge our mortality (though with ectopics, I had to do that before I even began treatments), and ultimately our deepest darkest fears.

      “Looking it in the eye and being at peace with it. That’s what it takes.” Brilliantly put.

    2. Thanks for prompting the discussion and giving us much food for thought, Mash!

  3. Thank you for the lovely post, Pamela!

    I loved the movie The life of Pi.

    Beautifuly written: “Looking it in the eye and being at peace with it. That’s what it takes.”
    It took me almost a decade to me at peace with my infertility. Finally I am here, at peace and loving it. This will be my first Happy December in a decade. I am happy to be where I am now (and so relieved that the Dark Demon Years of Infertility are behind me, for good).

    lots of love to you & all your readers!

    1. Likewise, Klara! Glad to hear you’re in a good place to enjoy the holidays…

    2. Carolyn

      Klara – I daily struggle with “trying to be at peace”. My therapist tells me I need to stop fighting it and allow the grief to happen – I’ve gotten better but still working on it. I’m 2-years into moving on, know very well the “Dark Demon Years” you write about (“glad” I’m not in those years any longer). But it is still a frequent struggle for me – mostly around the holidays. I am encouraged that you are having your first Happy December and some day look forward to mine as well. Thank you so much for sharing, it is so helpful knowing that I am not alone.

      1. dear Carolyn,
        no, you definetely are not alone. I know, holidays can be hard. There were times I thought that for me – there will be only the dark (dark thoughts, dark feelings, dark everything).
        There is one proverb (or saying) in my language that says:
        “Sun shines every day, we just can’t see it sometimes because of the clouds”.
        I am glad that the clouds finally went away (well, at least most of the time).

        If you are interested in having a new pen-friend, here is my email address:
        Klara dot soncek(@)gmail.com

        All the best to you!

  4. gail

    I’m still working on casting off my chains. I’ve only been done with infertility treatments and tests for 2 years. I have moments of peace and moments of terror, but I am moving more toward the peaceful moments in large part because I am seeing that life can be full and rich and promising and that I can touch many lives without giving birth to any of them. I know it wasn’t what most of us had planned or hoped for, but (as my husband says) “It is what it is” and we are making the best of it. I don’t know if I could have faced this decision to not pursue motherhood without having a couple of strong, childfree women (like you) in my life. Thanks so much!

    1. So many good thoughts here!
      Glad to be of service, Gail. I appreciate your husband’s philosophy. Wishing you many more moments of peace…

  5. Pamela, it took me several days to have the time and to be in the right head space to read this post. I like that you make me think. And I am now enjoying the comments and conversation here.

    I am a bit shocked at the assumption by the commenter that patients will seek mental health counselling, at a time when we are vulnerable, hurting, in great fear, in the grips of addiction, and not entirely capable of rational thought. Here in NZ, counselling or therapy is neither common, nor talked about. So finding a counsellor and going to one is a huge barrier. It is also expensive. (And many pursuing IVF in NZ are publicly funded, and can’t afford any extra counselling. It is not included in the price of the treatments.) And it is not a priority. The day we found out we could not pursue treatments, my Dr (RE) said that he would get the counsellor to call me. I never got a call. I walked out the door, and was forgotten. No longer a fee paying customer, I was dropped like a hot potato.

    So I coped on my own. I look back now, and think that counselling would have been beneficial to me. Earlier I had had two sessions, around my second ectopic, and didn’t find a good fit with the clinic counsellor. And I was at a loss as how to find someone else. So I didn’t.

    1. Thanks, Mali. I very much understand how hard it is to have the wherewithal and clear-headedness to find a qualified counselor. I recently found this story that elaborates on The Dark Side of Fertility Treatments: http://www.psychologytoday.com/blog/cusp/201309/the-dark-side-fertility-treatments

  6. Ana

    In Portugal, the news media are pretty direct about the emotional and financial strain of treatments and failure. I suppose because our culture is more at ease with discussing pain than American culture.
    I think there also might be a class complex at the root of the insensitive reaction of some of the american public towards infertility patients: because in Portugal you can have 3 IUI cycles and 1 ICSI cycle paid by the State, most people can financially afford to try (although they have to pay 1000 euros per cycle in drugs and the monthly average wage is 800). Because in the US you need to have some money or access to credit, it may create a certain anger in those who cannot afford it and lessen the public’s empathy for infertile people, dismissing them as privileged.
    On a personal note, I had to check to see when we received our diagnosis and was shocked to find that it will be 4 years in January. After we received it, we discussed options, we even filed the papers to get on the public hospital waiting list. When the appointment was set 1 year later, we had already come to peace with the decision not to pursue treatments.
    Our marriage is still as strong as ever, in some ways stronger, but there is a sadness that will always be a part of us. All people carry several private hurts inside them, like little treasures that make them more human, unique and, at the same time, the same as any other suffering, living being.
    We’re also, like most of our countrymen, going through long term unemployment and financial struggles, so any form of parenting is, for now, out of the question. Maybe one day, in our later years, we’ll counsel young adults or foster teenagers.
    Right now, my husband is focused on retraining for a career change. He’s motivated, inspired and happy. I’m lucky enough to still have a job, for now, and I cherish our parents, our friends, our rented apartment, our privacy, our life more than ever!
    Still, whenever my thoughts stray to the topic of infertility, I always stop by your blog, Pamela, and it has never ceased to be a source of comfort and inspiration. Thank you!

    1. Thanks, Ana, for sharing your story. It’s so helpful to hear how those in other countries manage. I was struck by a few thoughts in your comments including this: “All people carry several private hurts inside them, like little treasures that make them more human, unique and, at the same time, the same as any other suffering, living being.” It reminded me again about how much of us are shaped large and small by the experiences and people that fill our lives.

  7. This is interesting to me. On the “finding counseling” – yes, it’s a good idea for people in situations that need this to do so. But there’s a long list of people who are comparatively unlikely to seek counseling: the depressed. People who are tapped out financially on medical costs. People who have already burned all their sick leave. People who are emotionally and mentally exhausted by medical appointments. (Whenever my OB/GYN office tries to refer me to another specialty, I remind them that it will be years before I have it in me to get in for anything besides an annual exam. I need an “annual” physical to see whether that funny mole is cancerous. It’s been three years since I’ve been to the dentist. I could pay for the visit, but I’ve burned out my ability to cope with medical appointments and I am taking baby steps to get back on a regular regimen there. The nurse getting this lecture always sounds confused, by the way. I wish they gave medical folks ANY training in the toll protracted treatment takes on patients.) All of these groups overlap directly with fertility patients.

    So I absolutely applaud fertility patients who recognize they need therapy AND go about getting some. I don’t even know how many counselors and psychologists I have called just to see whether they’re taking new patients, and gotten NO response. No one EVER answers the phone. I leave a message and I never get a call back. I think last year (or the year before?) I felt so bad I didn’t think I could go on. I collected the werewithal to call five counselors after looking them up on Psychology Today. One called back, leaving me a voicemail – “No, I am not taking new patients.” None of the rest even returned my messages EVER, NOT TO THIS DAY. For all they knew I was suicidal; in fact, someone calling a therapist begging him to take her on as a patient would be much more likely suicidal than the average member of the population, no? Forget finding the RIGHT counselor (I agree that’s a challenge) – I couldn’t find a counselor who would even reject me as a patient viva voce in a 30-second phone call! I live in one of the most populous areas in the US, and the place fairly shakes with counselors (and, apparently, even more patients than they can take. Can’t say I’m surprised, actually). This year, after reaching another emotional crisis (brought on by I don’t know what, but really, a grace – finally got me to make one last push to find someone who could help me), I found the RIGHT counselor. Now I just have to get myself to make regular appointments, which is itself hard. And I’m DONE with fertility treatment and can afford the appointments and am moving into a more peaceful phase of my life (even absent the counseling).

    I think the people who need counseling the most are the people who will have the most trouble finding it. And not just regarding fertility issues, of course. But any fertility treatment center should be hyper-sensitive to this issue – it should be an automatic, as it is with patients with terminal illness, people who’ve just loss a spouse or a child, college students in general (the health center at my undergrad had counseling for FREE. Why didn’t I take advantage of that then???). Yes, those of us who need it should find it for ourselves. And the homeless should take a shower, get a job, and feed themselves, right? But Christian charity (which has no analog that I have discerned in the PC wasteland, so I know not what translation to offer) demands that we approach people with the needs and burdens that they have, not the ones they SHOULD have.

    This isn’t meant as a lecture directed at Ms. Gombar. I think she makes a lot of good points, and I am impressed with her approach to dealing with fertility issues generally – much healthier and more sensible than my own. I’m really railing against being left out in the cold by an industry that presupposes weakness, feeds on weakness, fosters weakness – and pretends there is no weakness. I know what it’s like to be able to deal with NOT ONE MORE call to see whether someone will treat you; to prefer never getting out of bed again to adding another (miserable) item to the to-do list. It’s an ugly life. More help is needed.

    1. What a harrowing experience to be so invisible and neglected! It’s no wonder you’re hesitant to re-engage with the medical establishment! So glad you’re moving into a peaceful place…

  8. Ana

    I forgot to add another comment to my already huge one (sorry): I sensed a different approach in the public sector than the private one.

    We went through all the test and diagnosis phase with my usual gynecologist, who also happened to be a fertility expert (at her private office). She referred my husband to a urologist, but the file was based at her office, so to speak. When we decided not to pursue treatments, we went to her office just to let her know of our decision – out of courtesy and respect for her work. She seemed completely deaf to what we were saying – acted as if we were going to do it anyway, and charged us the visit as if it were an appointment. This surprised me, because, over the years I’d known her, she had always acted in a courteous, professional and attentive way – she seemed to be listening.

    On the other hand, when we received the call from the public hospital telling us that the first appointment had been set, I explained that we weren’t going ahead with it and asked them to free our place in line for the next couple in need of treatment – they were very respectful, told us that, if we changed our minds, they’d hold on to the paperwork, but did not insist or act as if we didn’t know what we were saying.

    Also, the first appointment in the public sector starts, as procedure, with a separate phsycology appointment for each spouse.

    I suppose that the sad truth is that money can warp people’s motivations and actions, even those sworn to an oath.

    Also, like Misfit, I’ve had a hard time returning to my annual gynecology appointments. Haven’t been in 3 years, since my last pap. I’m due for another one, and I still haven’t booked the appointment, because the thought of going to a new doctor and having to explain the whole soap opera is exhausting. But I’m going to bite the bullet and do it anyway – cancer prevention waits for no woman!

  9. Carolyn

    Thank you again for such a wonderful, well thought out article. I now have to go read (see?) The Life of Pi.

    After being distracted by the first discussion I had to go back and reread the article. I do remember being referred to a counselor (after 4 IUIs and 3 IVFs). I went to see her and all she did was push adoption, which for many reasons was not for us. Then we had a 4th IVF and the “world’s most renown doctor/clinic”. We, too, were in the unexplained category. After the last failure, that was it for us. No more, I was determined to move on. And then, my stepdaughter got pregnant at 18. I went to another therapist – told her I needed help in moving on but ended up in another IVF cycle. After that my husband said enough is enough – you need to either choose children or me. I give my therapist credit in that she said that she wasn’t equipped to deal with our situation and referred me to another therapist. And, the third therapist was the charm. I faced the most difficult choice of my life so far – my husband (who was wonderful but fed up) or pursue my dream of having children. I choose my husband. (Choose not chose, we are still working through it.)

    I vividly remember one session, where I compared myself to others. Anyone else do this? Well at least I don’t have cancer. At least I have a loving husband. At least I have a stepdaughter. At least it’s not as bad as…….you name it – just fill in the blanks, I’m sure I thought it. Or, others would say to me, “you should be thankful for…..”. I am thankful. I am grateful. But it still hurts.

    Because my situation wasn’t as bad as others, I felt that I had to move on, “get over it”, didn’t have the right to grieve. In expressing all these feelings to our therapist, she looked me in the eye and said, “I think hurt is hurt”. That was the turning point for me and I tried to stop burying my feelings (still working on it) and gave myself permission to grieve.

    Point being, therapy is great – if you can recognize it, find the right person, and have the resources/means (emotional or otherwise) to be able to do it. Not everyone is so fortunate.

    Everyone has a story. Every story is unique. And, hurt is hurt. If I have learned anything from this whole ugly experience, it is to be more empathic toward others who are in situations that at first glance don’t “seem” to be so bad.

    I usually don’t tend to be so long-winded. Bottom line – thank you again. Thanks also to all those who commented on this post with very insightful thoughts and feelings. May all of your holidays be the best they can possibly be.

    1. So glad that the third time was the charm and that you’ve begun your grieving and healing process. I so agree that Hurt Is Hurt — and that no amount of comparing it will make it feel less so. I learned that myself the hard way.

      Thanks for sharing your experience and helping others in the process.

      Returning the warm wishes for this holiday season, Carolyn.

  10. Battynurse

    This is a great post. I’ve thought many times about what I did do in my attempts to have a baby and that I likely should have stopped before I did. I know it can be a delicate balance between feeling like you tried everything you could and losing yourself to it. I feel a bit like I lost some of myself to it in that I pretty much ruined myself financially. I’m still trying to dig my way out of the financial hole I made and it will still be a few years before I manage it. I also feel like I put so much of my life on hold for the time when I could be happy because I finally had a child. Now I’m instead trying to reconcile a life that I know is good and worthwhile even though it looks nothing like what I thought it. Would look like.

    1. I’ve seen you come a very long way, and I admire all that you’ve accomplished and contine to achieve in your life! You have much to be proud of…

  11. Cathy Broadwell

    Hello Pamela,

    Thank you for this wonderful post. I think about you alot actually and am sorry that I have not made the time to keep up corresponding with you and offering my support (as well as seeking support). This entire topic and reaching out to you on occasion made it onto my goals list for 2014 that I just wrote yesterday. So here I am writing a comment to your blog on my lunch hour!

    I loved this at the end:
    “In this year-end time of reflection, I wish Amy Klein and all who find themselves in the grip of infertility’s worst struggles the strength to find wholeness and the priceless gift of peace.”

    Briefly, I am more at peace with my recent decision to remain childfree, and to not pursue adoption at this time, or probably ever, even if the face of well-meaning friends who urge me to do so or to use their eggs. I also am “coming out” about this issue as evidenced by my using my full name here on this comment. I very very much wish there was more empathy in the world at large today for those of us who are or have struggled with infertility. It seems very cruel to me that we are largely ignored and forgotten, with “please change the subject” attitudes that I seem to encounter. No one wants to talk about or deal with our pain. We have to do it alone, but at least we have our silent sorority sisters. Thank you so much for speaking out. I am finding more peace each and every day….

    Cathy Broadwell
    (from Washington, DC who attended The Cycle documentary in NY and sat behind you). :-)

    1. So good to hear from you, Cathy! Thanks for your comments and for speaking your truths. I’m so pleased to hear that you’re feeling more at peace with each day.

      I’ve been mulling over my own 2014 goals list and how I want to continue to extend the dialogue with you and the many others I’ve come to know in the once silent sorority. More on that as my ideas come together…

  12. Cathy Broadwell

    Wow, some of these comments are flipping fantastic and very insightful. You ladies are really smart! Thanks for sharing your experiences and thoughts! We all appreciate it!

  13. […] of us who have had to pick up the pieces know all too well there are no clear instructions on what it takes to embark on a life path that […]

  14. […] being part of ‘Generation IVF.’ We continue to explore and plumb the depth of many complex emotions, the impacts of disenfranchised grief and fertility treatment scars. Let’s not forget the […]

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