Let’s Change Some Attitudes

“I don’t know how to deal with this…”

That’s a common response, albeit usually unspoken, for people in the throes of reconciling an infertility diagnosis.

Curiously, those are also the same eight words that pop into the head of someone who isn’t dealing directly with infertility when they learn someone close is swept up in the dreaded infertility maelstrom.

And this begs important questions, such as:

How can we talk about infertility, how can we help someone process infertility if we lack a common language or socialized behavior to do so?

Some life experiences — birth, marriage, illness, death — are universally understood. That’s because we are socialized in how to respond to them. We have words and rituals. We share common behaviors, norms — etiquette — that allow us to navigate and move through them with either social celebration or social healing and empathy.

Infertility? Just whisper it and everyone runs for the doors. No one knows what to say, how to react, what is expected.

Until now anyway. We can change that.

How? By supporting the need for an articulate, well-formed, thoughtful conversation that examines infertility in our society. Share a comment below about why you think the time is now to realistically and compassionately explores this taboo topic.

IrinaNow, meet talented documentary producer, Irina Vodar.  I interviewed Irina earlier this week by phone. Here’s a window into our conversation.

Why are documentaries so instrumental in changing attitudes?

There’s a great power in seeing reality.  Documentary is a way to look at the world around us, at the reality with penetrating glasses on. It’s a fascinating medium because it uses everyday occurrence as the building blocks and reflects how we perceive ourselves.  It offers a powerful way to understand and grow.

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Your first documentary was about a beauty pageant in a Siberian prison shown at the Berlin Film Festival, what’s been the response to your latest project idea?

Yes, I have one documentary under my belt. It was very successful and people were very excited to hear what would be my next choice of story. When they asked me, “What are you doing?” I would say, do you want to see? I have [a link to] a trailer. And they would say, “Yes, yes. Let me see. Show me.”

The usual reaction to my trailer was complete silence.  At some point I learned to distinguish whether or not someone I knew already watched the trailer because there would be this different quality in the way they looked at me. Like they really would not discuss it in any way or acknowledge that they saw it. In some instances people actually denied that they had seen it.

Later, when I conducted the first round of fundraising efforts from traditional film funding sources the response I got was that it’s not an art, it is an energy-sapping subject and too personal for a big platform. I stand to change this attitude.

I’ve seen how infertility can evoke strange reactions, too. Even hostility, why do you think that is?

First people are very uncomfortable with the subject because they don’t know how to relate to it. That’s something I see across the board. People are also uncomfortable, in general, seeing somebody else suffering.

We know within our culture that a time comes when a human being is born and you celebrate and you have baby showers, and you know there is a time when a loved one departs and it’s the time for mourning and it’s the time for condolences. People know how to behave in those situations.

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The basis for human culture – civilization – is creating a means for people to relate to each other. Infertility simply does not have that kind of culture or language associated with it so you cannot blame people for misdirecting their concerns.  They offer what they think are quick fixes, like “why don’t you adopt?” or dismiss infertility entirely and they think they’re being helpful but in fact they’re really hurting. That’s why it’s really important to establish a culture, a language that teaches people how to handle the situation.

When it’s infertility, there’s no, how do the lawyer’s say? No material facts. It’s all within the realm of expectation. You think, you hope to have the child. And the expectation is very real for you because you’re so involved in it. You’re the one counting days, administering all the shots. You’re the one going through all these incredible ups and downs. When it does not happen, the loss is also real.  It’s directly tied to your expectations and hopes, and not everybody understands what a huge impact it creates on you, the person experiencing it.

You’re facing strong headwinds. What drives you to continue with this project?
Infertility is still taboo. It’s important to develop respect, care, awareness and leadership around issues of infertility. It’s important to make it an accessible subject free of guilt and negative connotations towards the ones who go through the experience. It’s important to de-stigmatize it and make it a part of societal dialogue.

We need to create a language and culture of understanding about what is going on. First and foremost, on a deep personal level so we have a way to connect empathically with family and friends in the time of need. So they know a way to relate to us without causing more damage.

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As I wrote long time ago, at the beginning of my struggle, “my world is crushing and what I read in the press bewilders me. I thought, well, maybe they just don’t know what it’s like.” The problem runs deep, because it’s an innate psychological need of people to feel good about themselves and their surroundings, and ignore what doesn’t feel good. But as culture teaches us, the greatest humanitarian lessons come from the times of greatest challenge.

So it’s a powerful positive quest to make this world a better place.

~~~~

Couldn’t agree more…now, dear readers, it’s your turn.

~~~~
Irina Vodar was born in Moscow but has spent more than half her life in the U.S. (Chicago and now New York). She established Vodar Films and produced Miss GULAG (2007) to premiere at the Berlin Film Festival to critical acclaim, featured on Entertainment Tonight and NPR, broadcast across the world and selected by the Cambridge University Department of Russian Studies. Watch it on iTunes or purchase educational rights at Women Make Movies.

 

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55 thoughts on “Let’s Change Some Attitudes

  1. Erin

    Infertility has affected me so profoundly and it’s mind-boggling that even those closest to me cannot see that. I wish people could understand how much this infertility experience has changed me forever…in some good and bad ways, but unfortunately mostly bad. They have no idea how consuming this all is…it consumes me in some way, every single day. And more than that, that this life-altering experience (that we did not ask for), is experienced in silence by SO many people around them. We all go around like life is normal. It is not normal. Not for the infertile woman. I just wish those around me even had the tiniest bit of insight into this surreal, hellish world that those around them are living in. I know that some can sympathize with the pain that I might be in, but they don’t realize how much this has consumed who I am, who I was…they just don’t understand that this isn’t just something happening TO me, this is something that has changed WHO I am, forever, whether I ever end up with a child of my own or not, I am and will always be a different, infertile person. This pain of unsought transformation is real and should be acknowledged.

    1. Thank you, Erin, for sharing your thoughts and for underscoring just how much we are changed as a result of this shared experience.

  2. What’s been my experience with infertility? That’s a very big question, but I’ll respond just in terms of interaction with others.

    In short, people don’t want to talk about it. They’re uncomfortable with grief, and sadness, and just want to make it go away. They don’t think ectopic pregnancy or miscarriage is a “real” loss – you never had anything so you never lost it. There is a lot of judgement, and pity, and colossal ignorance. And that makes those of us who have suffered from infertility reluctant to talk about it. Which in turn feeds the ignorance, and keeps us hidden away in the dark feeling alone.

    So much emphasis in society is placed on “families” (and they define “family” as requiring both at least one parent AND child) that those of us who couldn’t have children often feel ostracised, ignored, judged, etc. And those with children don’t seem to be able to understand that even though we might feel grief and loss and sadness, we can also still go on to have very good, happy, fulfilled lives.

    Which is why this documentary needs to be made. To educate. To raise awareness. To bring alternative ways of having children and ways of living (without children for example) and those of us who have been through this out into the light.

    1. I hope, Mali, that with your writing efforts and through the perseverance of many others we will make some size-able headway in eliminating the ignorance. Here’s to shining a bright light…

  3. Janet DeCasas

    I was oblivious to infertility until it happened to me. I have lived with it for 17 years now and have seen very little change in societies views.

    I still have my days, still have aches in my heart and am still unable to talk about it with most people I know, It makes everyone uncomfortable -although when I share it makes me feel better. Maybe outing it in a relatable way will change the way people listen. It is a true loss, a grief as great as a death. When someone dies they don’t tell you to think of adopting a new parent or husband, brother or sister etc. For me it was also the death of the dream of who I should be.

    When infertility is discussed in the news it’s always about the strides in medicine the alternatives available and not the emotions for those involved. Lately with the documentaries making people pay attention to issues (Catfish comes to mind) I can’t help but hope this could be a great step forward!

    1. Thank you, Janet, for finding the strength to share your emotions. I do hope one of the outcomes of this efforts is that we can help those around us to become better listeners…

    2. Kelley

      “When someone dies they don’t tell you to think of adopting a new parent or husband, brother or sister etc.”

      That hit the nail on the head. Even though my husband and I are trying to foster/adopt, I get tired of the “just adopt” response. First off, there’s no “just adopt”. The process is hard and not everyone can because there are many restrictions. Secondly, children aren’t fungible commodities!!! I know the people in my life that made those comments to me said “just adopt” as a way of “fixing” the issue and making me feel better, but it doesn’t work that way. My bio-kids that I hoped for would have been real and unique and very much loved people if my husband and I had been able to conceive them and if I had been able to carry them to term. They can’t be replaced. Also, if we are one day able to adopt, my adopted kids won’t be mere substitutes for them. They can’t be because they’re also real and unique human beings who have to be loved for who they are. Adoption is a route to parenthood and not a treatment for infertility which is a group of very real medical conditions. I think a documentary on this subject is a wonderful idea, if only to address very salient points like this one.

      1. Becky

        Well said Kelley! Thank you! My husband and I just came to the end of our fertility treatments with only two miscarriages to show for it. I’ve been beating myself up with the “just adopt” adage, but you’re right. I’d never tell my mother-in-law who just lost her husband to just get a new one! Our children are irreplaceable.

  4. What’s been your experience with infertility?
    The first few words that comes to mind: Painful. Heart wrenching. Invasive. For me this disease is all encompassing, it touches every part of my life. For a while I let it drive my life, dictate every decision, finally after too much sorrow and madness it was time to let go, grieve, and move on. I still have setbacks, but it is the people out there blogging, it is the people who show grace and courage that have helped me to see yes there is life and happiness beyond infertility.

    Why do you think this documentary needs to be made?
    To show that all people are great, and no one is normal. We all have unique qualities/talents which lead us all down distinctive roads in life. We cannot change some of those traits no matter how hard we try (ie Infertility) but how do we as a community, or as an individual educate those around us so they are not left to wonder about all the things that make us great? … This film is a wonderful start!

    1. Your adjectives carry lots of meaning, Megan. There’s release that comes with grieving and coming to terms …
      I also very much agree with you that we are each unique in our qualities and in our power to influence others.

  5. Jessica

    Infertility has made me question and rethink every aspect of my life. From marriage, to job, to friends, family, and even my home; having dealt with infertility has changed me in so many ways. I’m no longer in the throws of the infertility grief, where I let it overtake my every thought and action. During that time I was a ball of anger, ready to cry or scream at the drop of a hat. By sharing my story and and realizing that I do not have control over this, I have grown in so many ways. For me a huge key to get over the grief is realizing that life does go on and I can be a wonderful member of society even if I never achieve my dream of motherhood. While I have come to these realization, many people, including my friends and family, have not. I still deal with rude and insensitive comments, but I’m now better able to let them roll of my back. There are days where I let myself have a cry or two. I must admit it’s still impossible for me to hold a newborn without the waterworks. But I’ve come a long ways and no longer feel I’m drowning from the infertility grief. I try and take things one day at a time and give myself the space and positive thinking that it takes to heal.

    1. I’m grateful for your honesty and for your determination to heal. We’re with you…

  6. Life Without Baby

    Am currently jumping up and down yelling “Brava!” but once I’ve calmed down (and reposted this) I’ll come back to answer your VERY important question.

    I’m so pleased you’ve decided to step up to this project. I know you will be an incredible force to see this project through. Well done, you.

    1. I am eager to hear your thoughts, Lisa — here and this weekend!

  7. What’s have been my experience with infertility?
    What amazing question! I have been thinking about it all day.
    Definitely, it has changed the personal dreams about our family. My husband and I got married 12 years ago, in those times we dreamt about those beautiful girls and handsome boys we will have one day. Well, those kids never arrived. “Unexplained infertility” was a new word that gets into our daily vocabulary. It’s important to note that we belong a catholic community where all marriages (including us) are openly pro-life or pro-family (I don’t know exactly how to say it in English). That year when we got married, there were 10 couples getting married. And suddenly, babies started to arrive (that was the natural path, wasn’t it?). Well, it started our “personal journey as a family-of-two”. I have faced all kind of comments and questions: When do you get pregnant? What are you waiting for? I’ll be praying for you to get pregnant (countless times). Why don’t you adopt? It’s not a selfish attitude your final decision. However, we have learnt to face this. Now, we just smile and say, thanks; or well, maybe it’s not God’s will for us. But, for me the hardest part is to know that my parents don’t have grandchildren because of me. I know that they desire them as much as us. Thanks God, they don’t pressure on us; but I see how they talk about their friends’ grandchildren. Up to this moment, my eyes fill with tears when I write this. They have done a lot for me, and I felt the “obligation” to give them some happiness in their old ages. I’m on my way to overcome this, but maybe it will be there forever and ever, that feeling of “guilty” (some days stronger than others). I hope my little sister can give them this blessing, but if not…
    Well, definitely, our life today it´s not that life that we planned 12 years ago. Sometimes you feel that you don’t fit, or you are an alien or something “rare creature”. However, we have embraced our life as it is, with its up-and-down moments. Passing through our personal process of grief for some years finally we are finding blessings where it could be misfortune or bad luck. We believe in God, so we know that He loves us so much that this situation is not a “punishment” or something like that. We believe in a God full of love for us, who is blessing us at any moment.

    1. And my heart goes out to you, Lorena. Thank you for sharing your story…

  8. What’s been your experience with infertility?

    Well, that could fill a book. ;) Let’s just say that, at 52 — almost 20 years after we began ttc, 15 years after the stillbirth of our only child and 12 years after walking away from infertility treatments — there is still not a day that goes by when I don’t think about it in some way… about what happened to me & my husband, about how it continues to affect my life, about the life and the family that I might have had. Even though I’ve survived, and my life today is a pretty good one by most measures.

    Why do you think this documentary needs to be made?

    There is a huge hunger among infertile women, no matter where we are at in our journey, to tell our stories, to be truly listened to and to have people understand — or, if true understanding is not possible, at least show some respect and empathy — for what we have been through and the tremendous, lasting impact that infertility has had on our lives. Particularly in the world we live in right now, with its glorification of pregnancy and motherhood.

  9. Life Without Baby

    I have never felt so completely lost and alone as when I was dealing with infertility. Despite having a wonderful circle of compassionate friends and an understanding family, no one knew how to support me and I had no idea how to support myself or my husband. It was completely foreign territory.

    Recently, a friend of mine was diagnosed with breast cancer and I sat with her through a 2-hour meeting with a nurse, who laid out information on tests, treatment options, and support services. I also saw how other people rallied around to support my friend and how openly she could talk about her disease and get nods of understanding and empathy.

    Not so long ago cancer suffered the same level of stigma that infertility has now, so I know that public opinion, understanding, and attitudes can change with intelligent and open conversation. Even though infertility isn’t generally life-threatening, it is absolutely life-changing, and no one should have to go through such a traumatic experience alone.

  10. Giving a Voice to Infertility - Life Without Baby

    […] You can read an interview with the documentary’s producer, Irina Vodar, in Pamela’s recent blog post. […]

  11. Jennifer Neil

    Every day, we make choices. Sometimes not making a conscious decision is still making a choice. I think infertility has changed my way of looking at the world. The bliss of ignorance has been taken away from me. I have been forced to consider my choices deliberately, taking nothing for granted.

    I’ve been subjected to summary judgment by strangers, patronising platitudes from friends and family, and exposed to marketing and advertising that has marginalised me and other childless (and child-free) men and women. I feel that I am on the defensive most of the time, and I’ve become even more cynical as I realised how little compassion there is in the world for those of us who don’t fit into the “norm.” However, it has also made me less judgmental, more tolerant and so much more compassionate.

    Perhaps more important than anything else, infertility has forced me to redraw the picture I had of myself, and it has been both freeing and painful.

  12. Thank you for your trust!

    These comments are so amazing! It’s the salt of the earth, the real emotions and real stories, real authentic sharing that will open up the space for people to acknowledge what is really going on and change the way we view the world! I’m humbled by the overwhelming response; it is a true privilege to work on a project that has a purpose and a meaning, and a real need. Just quoting your comments can soften up the most cynical of hearts, because for corporate world the strength lies in numbers and numbers we will show!

  13. Maria

    What has been my experience and why do I think this documentary needs to be made? Well here goes.

    First my experience. I had never been pregnant until I was 39 and after a lot of medical intervention. When I was in my 20s, I had a lot of pain mid-cycle and during my periods. My instincts kept telling me something was wrong. I complained to my doctor at the time at every visit and he was not concerned. So I largely felt ignored until he knew I was trying to get pregnant but even then I still felt like he did not take me seriously. His staff was incredibly insensitive too — his receptionist would ask me in an accusing way – why haven’t you gotten pregnant yet, are you even trying? Insensitivity from the general public I have grown to expect but it astounds me when it comes from the medical profession. After a year of not getting pregnant, a good friend gave me the name of an infertility doctor who is the best in his field in my State. He immediately diagnosed me with endometriosis, uterine polyps and premature ovarian failure. It was my worst fears confirmed. He told me coldly to have the surgery to correct the physical problems, but I was not a candidate for IVF and come back and see him if I wanted to use a donor egg. I left in tears feeling like I was completely on my own. My husband also had no idea what to do to support me. I navigated my insurance plan to find a doctor to do the surgery and my husband and I decided together we did not want to use a donor egg. A year after the surgery, we got pregnant naturally and felt like it was our miracle baby, but I miscarried at about 14 weeks. After the miscarriage, my new gyno examined me for about 30 seconds, told me not to worry, I would get pregnant again, and left. We spent 5 years TTC and I felt traumatized by the entire experience. We never got pregnant again. Throughout it all, we were questioned by family and friends about when we were having children, why we didn’t have children, and what we were waiting for. We were too upset to discuss it and when we did, we were always told, why not just adopt. We attempted that process but were too emotionally spent and decided not do it.

    I applaud you for making this documentary. People do not understand the physical and emotional toll infertility takes on a person and their marriage until they experience it themselves. Even the medical professionals treating infertility don’t understand or choose not to. People also don’t understand that adoption is not easy and, even if it was, why it is not a simple fix. Yes it provides children to couples but it doesn’t remove the grief surrounding the feelings of failure or the desire to have your own genetic family. Education and awareness are what is necessary to not only help the people going through infertility, but for the people around them to become more sensitive. I can’t wait to see your documentary when it comes out.

  14. Mrs. McIrish

    What has been my experience and why does a documentary need to be made?

    My experience has been miserable quite frankly! I just suffered a miscarriage from my final IVF. It was my very first pregnancy at age 39 and I had been doing non-stop treatments from age 37 when I got married. It was my 6th IVF and I even used donor eggs the last two cycles. People assume that if you are infertile, you can “just” do IVF and it will work. Even REs promote donor eggs as being fail proof. The truth is that not everyone gets their happy ending. I was lucky enough to have insurance coverage for the majority of my treatments since I live in a mandate state. But I’ve used up my insurance and cannot spend tens of thousands of dollars to try again. We need a documentary to expose the incredible financial cost and emotional toll IF takes on those of us who find ourselves caught in its web that you cannot escape. The general public has no clue how expensive treatments or adoption is. Plus, you get no guarantee. A lot of it is trial and error. There is just so much that doctors don’t understand about conception. As hard as treatment was for me, stopping it is even harder as you have to accept that there are no more tries, all hope is ripped away from you and you have to continue to live in a world that is filled with kids and families. You still have to witness all that you will never have. For the most part, those around me forget what I have lost and yet I remember every single day. I feel very much alone as there are so few resources for the childless. Advice from people who have never walked in my shoes annoys me. I don’t need someone who has 3 kids telling me how great my life can be without kids or someone walking away for me at a cocktail party because I don’t have kids. Fertiles do not have any concept how hard it is to be me nor do they care 95% of the time. Maybe a documentary will open their eyes just a little?

  15. Elena

    I am Single, 41 and childless by circumstance. Or If, medical problems were on the side of my expartner. So it’s not my Body that’s infertile and still I have no child even when I have hoped and dreamed of one and done much to have one for so many years. In our Time we believe that science – medicine – can fix everything and Talking about the fact that that is simply not True touches a taboo because it reminds us of our mortality, nothing less. Also I think women’s Lib has had such an important Impact (i’m a Feminist!) but it has confused the value system in western society deeply. While earlier generations of feminists openly questioned procreation under many aspects and fought for women’s right NOT to have children when they didnt’t want any, nowadays it seems that to handle the confusion a new Dogma has been created: a woman is Free to do anything she wants AS LONG AS SHE PRODUCES AND RAISES CHILDREN. So an Old taboo is even enhanced instead of abolished. It is very important that this documentary is being made and I would Love to contribute.

  16. What a wonderful and exciting project – and just fantastic that you, Pamela, will be serving on the advisory board. Infertility continues to be the big gigantic elephant in the living room, and living without children too often means dropping off the radar. It is something hardly acknowledged, even in professional circles. Kudos to Irina – this documentary will contribute to shining a light on the many losses, identity challenges, and transformations brought on by infertility, and strengthen the community that is emerging through this work.

    1. Mrs. McIrish

      Dr. Marni,
      I just started reading your dissertation last night. As someone who is only a week or two out from stopping treatment (still waiting for a zero beta following a m/c with donor eggs), I am so happy to have found your paper since I have no idea what to expect or how long it will take for this giant ache to stop/dull. I don’t know anyone IRL who has gone through this. Thank you for your attention to this subject.

      1. Mrs. McIrish, I am so sorry to hear of your pain and losses – my heart aches for you. And I know how the isolation intensifies everything. Please know you are not alone, although it may feel that way. I’m certain that everyone here in this virtual community is right there next to you, offering their deepest empathy and support.

        Glad to hear you are reading the dissertation – thanks for letting me know. I hope you find it helpful. Hang in there – and remember, one day, or moment, at a time.

  17. Jackie Oberio

    This documentary should absolutely be made!!

  18. Isolation. Infertility and childlessness can lead to a real sense of isolation, which produces its own layer of grief. Women tend to bond over their discussions of children; without children you can lose not only your shot at motherhood, but also buckets of female friends. Infertility and childlessness ARE still taboo, and a documentary would go a long way to open the door and air out the stagnation on this subject in our culture. If I hear how I could “JUST adopt” one more time, I may stick a fork in my eye.

  19. Karen

    My husband and I have been trying to conceive for three years post vasectomy reversal. I am 33 years old and hoping that we will have a family through IVF. I talk about infertility alot with my friends because I do not wish to suffer in silence. People tend to ignore me or change the subject when I talk about infertiltiy but I feel like my strugles are valid like their strugles are valid. If my friends can discuss their difficult pregnancies, then I can discuss my infertiltiy. I think that your documentary is a wonderful idea and I support it completely. I don’t want to see other women suffer alone or suffer in silence. It makes an already difficult diagnosis even more difficult to bare. Shining a light in the dark is the only way to push out the darkness. Thank you for making a documentary on this subject.

  20. The infertility experience is, of course, nearly impossible to summarize or convey (hence this massive communication gap), but many moons ago I read a blog post (whose author I have forgotten – she has children now) in which I saw it all neatly tied up in one sentence: “Infertility is the place dreams go to die.” Sometimes, when people are showing greater than usual obtuseness, I quote that (you can imagine how much they love it). I suppose it sounds all emo and self-absorbed and melodramatic. But my experience tells me it is a plain, simple fact.

    In terms of my experience of infertility and dealing with the fertile world, I have come to an interesting realization lately. I’d like to think I’m in the twilight of the infertility experience (or perhaps that metaphor would work better backwards – so then, it’s just about to be dawn). The darkest and most painful part – treatment, and the poisonous hope that accompanies it – is over, and I just have to settle into the dull but manageable pain of not having the life I expected, and that the rest of the world continues to expect on my behalf. In this phase, I’m finding that it’s much easier to talk to those other people, and for a reason that will probably seem intuitive to other infertiles. Not because they can accept me more easily now, or because my current sadness is one with which they can deal better, or because they have learned with me and become compassionate in a helpful way. Rather, because I have gotten to a point at which I can listen to long narrations of struggles with bedtime, and suggestions that I feel the baby kick, and so on, and not stab anybody. Expecting even a friend of many years simply to remember THAT she’s talking to a woman who can’t have children is asking much too much. I have to expect nothing from others that resembles what I understand love or friendship to be.

    I talked to my spiritual director about how angry I was, so often, about the things people said. How I could let it go only by reminding myself that they were imbeciles, faithless friends, useless, people from whom nothing good can be expected. And he said, “What does, ‘Father, forgive them, for they know not what they do’ mean to you?” It being Lent, that seems apropos.

    I applaud the thinking behind this movie, but I think the development of an etiquette around momentous experiences (such that a person who has never lost a loved one can still find appropriate words with which to express compassion) requires a cultural consensus on what is important and what is appropriate. Obviously something is better than nothing, but I can’t really get my hopes up that a documentary will make a difference. First of all, the people who need it would have to watch it, and they don’t understand that they need it…

    I think the infertile-fertile dynamic is always going to be one where we’re on a constant campaign of forgiving people who will never apologize. And I shudder to think how many people around me are on the other side of that dynamic with me, because of their sufferings that I don’t understand or even see.

    1. Rose

      Misfit, that’s a brilliant, eloquent comment – I agree with everything you say but I couldn’t find a way to express it.

    2. Misfit, that’s also one of the things I felt after infertility…I was overwhelmed by so many different emotions, including what you wrote here: “I shudder to think how many people around me are on the other side of that dynamic with me, because of their sufferings that I don’t understand or even see.”

      It’s strange what kinds of emotions that infertility can evoke…but anyway, at the end of the day I believe we can only do our best ‘coz everybody is different and their reaction to a “tragedy” is also different. One close friend of mine (a mom), who suffers from survivor’s guilt, has told me once how confused she was when she tried to be sensitive to a friend of hers who told her about the miscarriages she had experienced. With me, she knows that I don’t want “false hope” and that we’ve given up on children, but she didn’t know if that friend was still hoping (wanted to hear hopeful words) or what? OK, enough babbling…

  21. bubli

    My husband and I don’t even use the word infertility. We never chose to go through testing as I have other problems that we knew would make IVF impossible. We went straight to adoption in the hope that would work. It didn’t.

    For me the word infertility is too small for what we have experienced. It is childlessness NBC. There is the isolation, grief, and loss of dreams. I feel diminished as though I can no longer be confident about my body, my abilities, hopes, or dreams. My marriage has survived but we are taking baby steps trying to heal ourselves and each other. People don’t understand that while we look the same on the outside, on the inside we have been shattered. There are so many pieces we need to put together but nothing will ever be the same. There is no pathway for when you walk away. People assume once you stop, all the emotions end and you become “yourself” again. I want to scream out loud that my “family” has died, let me grieve. But as a society, we’re so busy focused on being “happy” that it takes courage to acknowledge loss on any level.
    My loss isn’t a pregnancy. It is two children we nearly adopted, pictures, names, toys I will never buy, hugs I won’t get. My loss is REAL and not in my head. That is what I want people to know.

  22. […] opening the public forums for discussion. She loved my concept for the documentary, The CYCLE, and shared it with her readership. The comments I have received were so thoughtful and immediate, so touching and […]

  23. My experience with infertility? Well, even my closest friends have said that despite the things I’ve shared with them (and the links I’ve sent them), they still can’t really fathom infertility too well. One of them even says that reading too many posts written by an infertile is too hard on her ‘coz it’s just way too “dark” and in the end she can’t empathize anymore (I really thank her for her honesty ‘coz it makes me realize even more how tough it is to understand infertility).

    Another friend, though, suffers from survivor’s guilt after reading many blog posts written by infertiles. Not something I would like for a close friend to suffer, but her genuine heart is something I value and cherish. :-)

    Other than that, when we first found out we were infertiles, I felt alienated. Invisible. Misunderstood. My closest friends were baffled at the depth of a mixture of feelings that I felt and they were even wondering why I called myself an “infertile” (it made me feel as though I was “jinxing myself” for having said that). But I really longed to be with those who understood, who would make me feel less alone, who would help me make some sense of what my chaotic inner world was telling me. I was in so much pain and anger that it just affected my relationship with every single person on earth including my own hubby (well, on good days it was better, but on bad days I could just snap at every single thing and my self-defense mechanism was really at its peak with its alarm blaring loudly every so often). Even a small interaction with a smiling baby could just make me cry right on spot in the middle of a crowd and seeing baby bumps could just make me “see red” and feel self-pity. I got angry at God and many people who I felt have “wronged” me by saying all the wrong things or even joking about our situation. I was bleeding inside. Back then I considered myself a “victim”.

    Now that we’ve let go of life without children, I call myself an infertile survivor, but I still feel the need to talk to others “like me” who don’t end up with babies/children, because I feel that I can relate more to them. I don’t feel angry anymore. I don’t feel too melancholic anymore, but there are still times when some things would set me off, though it’s still not as “dark and gloomy” as it used to be. My wounds have healed and dried off, but there’s still some keloid left that would feel unpleasant and even a little painful when “bumped against harsh surfaces” every now and then.

    Pamela’s book as well as her blogs have helped me greatly in moving on. Still on bad days I feel “out of place” in this world where there are more mothers and parents and grandparents, but thankfully those days aren’t as many as it used to be. When I felt like a “victim”, anything could trigger my anger/pain in a split second. Now that I’m a survivor, I try to focus more on what we have instead of what we don’t have and I try to regain my self-value as a human being/non-mother/non-grandmother – and my “comrades” (fellow childless-not-by-choicers) have helped me along the way through their insight and their life experiences. :-)

    1. Oh, forgot to add: I’ve never been pregnant. We’ve decided to surrender to life without children about 3 years ago. I’m going to be 35, hubby’s soon to be 42.

  24. Rose

    Infertility has been a bitter experience and has caused a lot of upheaval in my relationships with friends and family. The first point to consider is that you are definitely not allowed to grieve for too long: people will become exasperated with you if you don’t bounce back pretty quickly. After all, you’re not dying, are you? And whether or not this grief is viable is very subjective – the only group to have any empathy with the infertile (in my experience) are the infertile themselves. Sympathy is thin on the ground: my single friends were only superficially interested (I was told I was lucky to even be contemplating IVF because it meant I had a man); busy friends with kids tired of the subject very quickly and started to produce exasperated comments like “grass is always greener, eh?”; my sister is still not talking to me three years later because I used some over-emotive language when I objected to her telling everyone about my treatment. That last rupture saddens me every day. Infertile friends who go on to have babies get amnesia and avoid you. But the main problem is that a very large group in society feel viscerally that IVF etc is a waste of money and doctors’ energies, there are much worse things – this attitude is very pervasive and will be hard to shift. A lot of misguided responsibilities are projected onto infertile people: we should save all the orphans; we should save the word from overpopulation; we should have started trying earlier; it’s good that we can’t have kids, what with all the benefit scroungers popping out so many babies……blah blah. Just read the tabloids or stop someone in the street. And single women with disenfranchised grief at being childless are another thing altogether: they don’t esist. How, exactly, can we make people, and the media, change their ideas….? After going through failed fertility treatment and experiencing a very limited period of sympathy from everyone (I’m DEFINITELY meant to be over it now), I wish there was a different focus, alongside treatment – I wish wholeheartedly that child-free living was presented as a viable option by practitioners, instead of just shunting people on to donor cycles, or abandoning them to their hidden grief.
    All very cynical, I know, and thank god that people like you are doing something to highlight all of this!

  25. Nicolette de Ridder

    A fantastic idea to make a documentary and if you are interested I am more than willing to be interviewed and so is my husband. We stopped our fertility treatments in May 2007 just before i turned 39 after 6 years of several IUI’s and 6 IVF attempts without result. We are one of the couples they couldn’t find anything wrong with so it was quite hard to stop treatments and hope since there was nothing wrong with us? In January 2012 I started writing a book about the grieving process and how we came to terms with infertility. The book is written by myself and my husband. There are books written by men but they always ended up with a success baby. In our case we wanted to share our journey without ending up with a child, even after trying adoption in the Netherlands which didn’t work out because of our ages. I hope to publish it in June this year and I can’t emphasise enough how important it is to show more attention to infertility and move it from the ‘shame’ corner into the limelights. I am still a woman, I am still having a fulfilling life and yes…it is possible to enjoy a life when you end up by yourself of like me with my husband and being ‘just the two of us’.

  26. Kelly Fleming

    Sometimes I think if I hear one more pregnant woman say ‘I’m so blessed’ I might scream. Because it says that God didn’t bless me. And maybe there was a reason for that. Maybe I wouldn’t have been a good Mother. Maybe there’s something wrong with me. And then I read about mothers who terrorize their children and I remember that no, I would have been an amazing Mother. It’s not God who blessed you and didn’t bless me. It’s, well, it’s luck. Like why I was born in a first world country and not a third world country. I didn’t do anything to deserve this fortunate place in the world, just like no one asked to be born into a third-world country rife with civil wars or genocide.
    I’m tired of tv shows that start off with a wonderful script on infertility, only to have the ‘miraculous’ happy ending anyway. It tells people that maybe the infertile woman didn’t do enough, didn’t try long enough. She needs to eat this food or try this position or pray harder – in short, that somehow it was her fault. And when a woman is grieving the loss of Motherhood the worst thing you can do is tell her it’s her own fault, or wasn’t ‘meant to be’.
    I’m grateful to you for creating this documentary. It NEEDS to be written and screened by all. People haven’t got a clue what to say, and we could all use some help on that front. Thank you.

    1. Vita

      I think you make a really important point Kelly. I am a person of faith, but I’ve also come to believe that infertility is not “God’s Plan.” There is a randomness to infertility that is one of the most painful parts of it all. “Meant to be” is utter BS. It is as random as a card game and we have to play the cards we are dealt, which is incredibly painful to admit, but nonetheless true.

    2. carol

      Oh, “blessed”!
      We were at my cousin’s wedding where the minister said “May God, if he chooses, bless this marriage with children” or something like that. I just lost it. I was weeping, trying to get control of my breathing. I have never felt so unblessed.
      I was trying to be prepared for all the little “jokes” about starting a family that happen at weddings, but I didn’t expect the service itself to trigger all my infertility grief.

  27. Kathy Ravinski

    So, I have been checking back on this post now for several days reading all of the amazing stories from strong women who’ve been left out of the motherhood circle for one reason or another, and thinking about what more I might add. Besides being more than happy to contribute in some way to this important documentary project, I will start by saying that infertility has changed my life forever. My husband and I tried unsuccessfully for many years to have a family. It has been over 5 years since we made the decision to step off the ART treadmill. While I can say (still with some disbelief given the depth of my sorrow) that the intensity of my grief has lessened and we are making our way as a family of two, not a day goes by that I don’t think about how things turned out for us. We are determined to (and do) find joy and productivity in other ways, but it is not always easy. I still find myself shaking my head, dumbfounded in quiet, private disbelief. Life wasn’t meant to be this way. Is there really only one other person at our dinner table night after night? We are grateful for that indeed, but it was not at all what we had imagined.

    Recently someone asked me, “Have you healed from that loss?” I know I have made progress because the question didn’t infuriate me in ways that it would have at one time. I had to pause before responding though. I told this woman that yes, healing, to some degree, has taken place. But my position as a non-mom in a family-centric, mommy-obsessed world (and I teach first grade too, mind you), will very likely impact me for a life time. I say this not from a place of self-pity, but of hard earned truth. I told her that I coexist with my sorrow now. Life has taken on a different rhythm. We are finding our way. But my friends Sorrow and Anger visit from time to time. Not as often as before certainly, but they do come. Usually they come when I least expect them. I have learned to listen to my quiet, wise inner voice and allow the hole in my heart to open so it can have its say. The wrenching sobs still come now and again. My husband holds me close, passes the tissues and I let it out. He knows I will be ok in a day or so. He knows too that this will be our grief to face as our friend’s kids grow, as our nieces and nephews marry and start families of their own (two new babies this month), and as those close to us celebrate the countless “family” milestones that will never be ours.

    I am resigned to the fact that few truly understand our loss and certainly the shelf life for any understanding expired years ago in the minds of many. But I do hold precious the few friends and family members (one of my aunts in particular) who do make an effort and remain sensitive to that hole in my heart that will never fully heal. I would like to give hope to those who are still angry, resentful, heartbroken or whatever other feelings you may be wrestling with. There can be many! Everyone’s journey of healing and acceptance is unique. We will not all end up in the same place, but I do hope that little by little, day by day you find your way in this life unexpected. I cannot change how life turned out for us, but I have learned to trust (ok, sometimes with a raised eyebrow) that there are and will continue to be gifts for us to embrace and a life in which we can thrive. Blessings to all.

  28. Vital

    The one thing that I will add, which hasn’t yet been mentioned, is that the pain of secondary infertility is also heartbreaking and sorrowful. I have experienced both primary and secondary. Having been successful with IVF, I lulled myself into a false sense of security that I would be able to build my desired family, with the help of medical intervention. Taking that success for granted was a huge mistake. The struggle with secondary infertility has been just as difficult, albeit, different. The anger, sorrow, pain is persistent, all while living the child-centric world we all so desire to be a part of. I know I am lucky to have a child, while so many others still struggle or have moved on from their struggle. I no longer take that for granted. However, the isolation, the pain, the damage to relationships persists with secondary infertility. The hope that turns poisonous with each failed medical intervention takes its toll on your physical and mental health, on your marriage, on your sense of self. The questioning of “how far am I willing to go?” to make my dream come true and “when is enough, enough?” haunts me daily and I am constantly second-guessing myself. I know I will never be the same after this experience and I am getting used to the new me after this struggle, I am still trying to come to terms with that.

  29. I’d like to thank all who took the time to comment on this post. Your heartfelt responses reinforce both the need for this type of documentary as well as the complexity of the experience and the emotions that it evokes. Film producer Irina sent this latest update: “I’m working on the trailer. I have a completed a version that I’m tweaking now, making sure it communicates well before releasing for feedback. I’m excited to share it with you soon.”

    This project is in early days. We’ll keep you apprised on its progress with periodic updates.

    Meanwhile the comments section remains open …

  30. Kelly Fleming

    What’s been your experience with infertility, and why do you think this documentary needs to be made?

    I don’t know how women before us got through this, without blogs and groups to reach out to.
    We tried ivf 4 times and ended up with 2 miscarriages. And I know that I am lucky to have experienced even that amount of motherhood. People haven’t got a clue what we are going through, what to say, or how long our heartache goes on for. At some point I’m expected to ‘move on’ like as if this were a relationship I decided to get out of, as if I could ever attend a baby shower again and not feel my heart being squeezed to death.
    I came out of this with rheumatoid arthritis; the day after my D&C for my second miscarriage, I had my first flare. Apparently it was in the background, just waiting for something to trigger it, like menopause or stress… you get the picture.
    My marriage didn’t make it, although we are still good friends.

    I’m so tired of seeing TV scripts with the miraculous pregnancy endings. I want someone to understand what it’s really like, that it’s not that we didn’t try hard enough, or that we didn’t eat/drink/do the right things to obtain our miraculous pregnancies. That if we adopt we will surely get pregnant right away. That adoption is just like having your own baby. It’s not. Please do this documentary, and make it good. I’d be truly grateful. Thank you.

  31. To Shower or Not To Shower - Life Without Baby

    […] glad Irina Vodar is producing a documentary on the subject of infertility that some helpful social norms will come of […]

  32. Kristy

    I have lived with my infertility for 11 years now. The physical pain I’ve had has been but a minimal aspect of it compared to the emotional struggles I have encountered. Its because of these emotional struggles that I believe this documentary is so vital to the infertility community. Women and/or men who are going through it need the guidance from those who have been there or are there now and the family and friends of those going through it desperately need tools to better understand and support them. We’ve kept silent about this for far to long and many of us including me have been hindered in our healing process because of it.

  33. To Shower or Not To Shower - Life Without Baby

    […] glad Irina Vodar is producing a documentary on the subject of infertility that some helpful social norms will come of […]

  34. Mel

    Several months ago, when some of the above comments were being written, my husband was fighting for his life in an ICU due to a complication from an outpatient infertility procedure. He survived, thank God. Now as he recovers physically, and we recover from the trauma of that medical nightmare, we must also try and heal emotionally and grieve the biological child we will probably never have. I, like so many of you, am asking “How did I get here?” and “Why is this happening to us?” …and so many other questions filled with sadness, anger and despair. I can’t believe this is happening to us.

    We started trying to conceive about two years ago and after about one year I searched online for a documentary to watch about infertility. I thought — well, there has to be some documentaries out there that I can watch/rent to hear other people’s stories and how they dealt with the pain, etc. But, I found nothing. I was shocked. How could so many of us be going through this and yet there isn’t even a documentary about it. It was then that I realized how lonely infertility is. I visited some online discussions but they were all filled with trying to conceive lingo and were about procedures people were trying and recommending — not so much about the human experience of it all.

    There have been many times when I’ve felt that all of us that are suffering from infertility are walking around with backpacks (on backwards) of pain sitting on our chests. And I’ve fantasized that all of with these backpacks could see them but they were invisible to everyone else. That way we would know who else was suffering in silence and we could give each other that look that says “I understand.” or maybe we would introduce ourselves and go get a cup of coffee and talk about how heavy our backpacks are.

    I’ve talked to some family and friends about it, especially after the medical emergency my husband suffered. They try to be compassionate and supportive but they don’t know how and they don’t understand what it’s like. I’m sure they would like to watch a documentary as well. — People do need to be educated on this topic. I’ve had someone say to me “I’ve been pregnant three times, it’s not all that — trust me, motherhood is not about the pregnancy.” They were saying this to me to make me feel that adoption was just has much parenting as having your a biological child. I appreciate the effort, but I really just wanted to slap her.

    One of the reasons a documentary needs to be made is to shed some light on male infertility…which is talked about even less than female infertility. It’s devastating for men to see their wives sobbing when they get their period, feeling that they’ve failed them. And often, men don’t want their wives to share their infertility problems with others. They are usually more private about it than women. You feel so alone.

    I am so supportive of your project and hope that this small piece of my story helps.

  35. Mel

    Also, I would love to hear from women that never had children because their husband was infertile and how they were able to “move on” and find contentment in their lives without ever having experienced pregnancy. And how did it affect their relationship? Did they ever resent their husband or regret staying in the relationship? Did their husband always feel that their wife had missed out because she stayed with them? There are so many ways that infertility can affect a relationship and I wonder how couples have “successfully” navigated this terrifying minefield together.

  36. […] I know how hard it is to be in the silent majority. That’s what led me, documentary filmmaker Irina Vodar and Dr. Marni Rosner to hatch a grand […]

  37. Rose B

    First, I would like to say I am so grateful for this website. And shortly after I found it, I bought two tickets for my husband and I to go to the event THIS FRIDAY NIGHT (The Cylcle: Living a Taboo), and I am so excited to attend for so many reasons — one of the biggest being to be in a room full of people who totally and completely understand how we feel, what we’ve been through and how many struggles we are still facing.

    What’s been your experience with infertility, and why do you think this documentary needs to be made?

    To answer your question: My experience with infertility has been devastating, depressing, exasperating, lonely, extremely sad, frustrating, mind boggling, isolating, expensive, humiliating, anger producing, secretive, shocking, invasive, emotionally and physically painful… the list goes on and on. ALL of those emotions, and soooo much ignorance in the world and lack of empathy for what we have gone through, my infertility sisters and brothers.

    At first, I hardly talked about it. That was painful. The silence, thus the lack of support. Then later I told just the basic facts. I would maybe get one “I’m so sorry” every once in a while from a friend here and there. More time passed. Then later people started telling me that they wanted the “old me” back… By that point, I had lost my father (who wanted grand children) to cancer, my unborn children, and then my mother to cancer as well. You want the old me back? She doesn’t exist!!!! Grief and loss generally speaking don’t heal. They are always there. I will never get my parents back, hear their advice on what to do about infertility, or ever get to meet my children to carry on my family line. I can’t just snap a finger and get the old happy, carefree me back. I am forever changed. And I know ALL of this will affect me for the rest of my life. How to cope? Where to go from here? Who am I? Is THIS what a mid-life crisis is? Geez, how LONG does it last?

    Two of my close friends offered their support eventually via email, and let me know they were there for me. I was so happy to have some support, that I forwarded both of them an “infertily etiquette” article, along with telling them that I love them, and sorry that I haven’t been around as much as I have been seeking therapy and trying to heal. BOTH of these friends met the article with hostility, anger, and left the conversation completely, while the article completely resonated with myself and my husband (we thought “all of our friends should read this!”). We were both shocked. We decided that the fertiles are completely devoid of any ability to have any empathy for us, pretty much at all it seemed. They completely and utterly don’t understand, and apparently, have ABSOLUTELY no desire to try to step into our shoes. It is just too sad and too difficult and just not what they want to do. They want to go talk to a happier person about their kids. Oh, and they also of course want to tell us to “just adopt” and then they go be on their merry way. “Adopting is just like having your own kid except it didn’t come from your womb.” Um, not it’s not! Others make us feel selfish for not adopting an orphan as “anyone can adopt anyone else at any time.” Oh, you think so? NOT TRUE! It feels like “get back to us when you have stopped being so selfish and come talk to us later about the orphans that you adopted (that they have no interest in adopting mind you).

    It’s incredibly isolating and lonely.

    The documentary is a breath of fresh air. Sadly, I think only other infertile people will watch it given my experience so far. But even that is a step in the right direction. Us infertiles need to hear from other infertiles so that we don’t feel so alone, broken, and shunned. Thank you so much for taking the time to do this blog, to create a community, and for creating this documentary. I can’t wait to meet you Friday!

    (lastly, as an experiment partly, I posted two articles on FB about infertility, partly as a way to “out myself” as you did in a courageous act to let others know about our struggles and our broken reproductive parts, and I got hardly any response AT ALL. Meanwhile, any time a baby announcement, a baby photo, or a kid photo goes up, there are 20-50 responses on my friend’s FB pages).

    P.S. My husband and I are considering starting a blog called: Two Headed Sperm and Fried Eggs. :-)

  38. […] in The New York Times. The week film-makers show up in your living room to tape a segment for a documentary project. The week that you realize that decisions large and small made years earlier have all added up to […]

  39. 7 years and counting…. genetic issues…major surgery removing large mass and clomid side effects…. healthy remaining ovary.. degenerating menstrual cycles… but none of those cause me the emotional turmoil of the social isolation… and I’m not one to avoid the baby showers… kiddie enviroments…. but there’s no social spaces for us to meet new people that are very wholesome…. games night??? With no rebellion as a teen or other deep longings unfulfilled…. I couldn’t see this one coming… and for a while I believed it was my new reality!

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