When it comes to stories of infertility, there’s one we’ve all heard before: the one where a couple starts trying, excited to start a family. After a few disappointing months they begin to wonder. Eventually, they seek advice, get tested, and start every fertility treatment under the sun. From acupuncture to IVF to restrictive diets and more, nothing works. After much agonising and heartache, for a myriad of reasons, they decide to close the door on trying. Then, like magic, they fall pregnant naturally...
It’s not a myth; it’s surprisingly common, and no one can quite explain it. But as much as we all love a happy ending, the reality sadly isn’t always that easy to tie up in a bow.
Such is the case for Pamela Mahoney Tsigdinos, the award-wining author of Silent Sorority. Pamela endured over ten years of trying to conceive before making the difficult decision to move away from IVF.
“Infertility is not something you ‘get over,’” she says. “There is no closure. Instead you will ‘come to terms’ with it.”
One of the hardest things about accepting infertility is that there is no clear end-point, no obvious finish line. Instead, accepting infertility is often seen as accepting defeat – which is not the case at all. In her follow up book, Finally Heard, Pamela shed some light on the power of coming to terms with a future that didn’t necessarily look how she’d imagined it.
We spoke to Pamela about her personal story, why she detests the word ‘childless’, and her practical advice for talking to friends and loved ones about their fertility – or perhaps infertility – journey.
Can you share your own infertility story with us?
My 20s unfolded with the predictable: dating; new jobs; marriage. But then, one by one, my friends sent out baby shower invitations, and our life experiences diverged. The majority moved down one path – motherhood – while others decided, with certainty, that parenthood was not their dream. My path wasn’t quite so clear. At 29, after a year of carefully timed sex with no positive home pregnancy tests, it slowly dawned on me that fertility operated on a much broader and grayer spectrum.
The primal urge to procreate grew stronger as the months slipped away, driving me to seek out any and all knowledge available. First, I had a hysterosalpingogram (HSG) to rule out fallopian tube blockage, while my husband underwent sperm tests. We both made diet changes. Several cycles of the fertility drug Clomid without pregnancy led to more invasive testing. I underwent the first of two laparoscopic surgeries to combat endometriosis.
Over the next few years, I had multiple intrauterine inseminations (IUI) combined with Clomid and prescreened sperm. I also added Chinese herbs, yoga, more diet changes, chiropractic adjustments, and large amounts of red raspberry leaf herbal tea. Finally, we saved enough money for the expensive and most complex of the fertility treatment regimens we attempted: intracytoplasmic sperm injection in vitro fertilization (ICSI IVF) and subsequent frozen embryo transfers (FETs) coupled with acupuncture.
In the wake of hopeful signs my ovaries were pumping out eggs, learning those eggs were successfully fertilizing, beautiful embryos were growing, we allowed ourselves to dream, and I mean dream BIG, about finally holding our child in our arms only to have that dream shattered time again with failed IUI and IVF cycles.
During a decade of treatments, alpha pregnancy miscarriages and unsuccessful attempts to conceive, baby bumps and mom’s clubs became all the rage. I found myself a misfit with no social support network.
When did you make the decision that it was time to move away from IVF treatment?
There was no epiphany, no dramatic denouement. We were not driven there by a deadline or a master plan or even an entirely drained bank account. Our move away from treatment was a long, slow often circuitous process that sometimes led us back like a junkie in need of a fix to a reproductive endocrinology clinic for one more attempt. A little voice in my head kept egging me on (no pun intended): just one more treatment cycle; one more round of acupuncture; one more laparoscopy; one more blood test to determine if there’s a new factor we hadn’t considered or addressed – all the while the doctors scratched their heads with no clear explanation for our infertility, dampening our hopes further that we’d ever succeed.
When our new (and last) clinic was busy lining us up in the queue for yet another IVF round, it became evident to my husband and me that facing the excruciating emotional pain associated with the loss of another set of embryos might actually be harder to manage than the idea that we might be family of two. Then, a phone call from the clinic nurse informed me matter-of-factly that our scheduled IVF procedure would need to be cancelled as it overlapped with my 40th birthday. As a now imminent ‘high-risk’ geriatric mother-to-be, I had to get a mammogram and other tests completed before I could go back in the queue. The words ‘high risk’ and ‘geriatric’ echoed in my head and led to new concerns. I worried about putting a future child in jeopardy with a problematic pregnancy.
Strung-out and wondering how we would possibly cope with another failed cycle, a preemie or other serious IVF-induced health complications, I started to allow myself to imagine a life not driven by 28-day cycles and endless associated vigils. With the benefit of lots of exhaustive and exhausting conversations (and after consuming huge amounts of reading material on coping with infertility), my husband and I finally began to loosen the tight grip we had on our increasingly fragile dream. For months and years afterwards resisting the ever-beckoning siren song of the ‘fertility’ industry’s latest advancements was not easy.
As I look back on that difficult period, there were many emotional and practical considerations that led us to acknowledge it was time to find a way to move on. We’d seen other people go through double or more the number of IVF rounds without success. We weren’t getting any younger.
But perhaps the greatest consideration was the heartbreak of losing our IVF offspring. It was just too much to bear especially when the rest of the world (minus immediate family and a handful of close friends) didn’t recognize our loss or offer the support reserved for ‘legitimate’ grief.
Each IVF miscarriage felt akin to returning from a funeral home after arranging the burial of our children – and all the dreams we had for them – while the world continued around us, completely oblivious to our losses and related emotional struggles.
Talk us through your book Silent Sorority – did you expect it to connect with so many women?
Week by week and month by month, the chains that bound me to our next expensive infertility ‘fix’ began to chafe. Writing became a release. At some point I awakened to the fact that our pregnancy pursuit had morphed into a torture chamber. I realized I was in a silent sorority – one imprisoned not only by our body’s inability to deliver a much wanted child, but by hearts and souls tortured by what ifs and longing.
All the infertility memoirs and profiles I’d ever read had one thing in common: the stories ended with the successful delivery of a baby. I simply could not relate and set out to write real-life memoir about what happened when confronted with the unthinkable: life as a ‘non-mom’ after devoting years to getting pregnant. It’s a guts and all look at finding myself again.
As much as I wanted to bury my trauma-inducing experience and erase it from my memory, I found I couldn’t. My sole writing motivation – you could say it was a calling – was broadening the infertility narrative with some truth telling about what happens when conception and pregnancy prove elusive. I knew I could not be the only woman who had devoted years to deciphering an infertility mystery who came away without the successful pregnancy we had worked so hard to achieve. It was time “our” story was told.
I was literally driven to write. I woke up many mornings as early as 4:30 am with passages in my head. I’d climb out of bed and write for several hours before going into the office. It was as though I didn’t have a choice. It felt like destiny. It clicked one night when I heard Bob Dylan say on 60 Minutes:
“Destiny was looking right at me and nobody else … I don’t know how I got to write those songs. Those early songs were almost magically written.”
I’m no Bob Dylan, but that’s how I felt about Silent Sorority – at times it felt magically written.
I had two audiences in mind: 1) women who felt disenfranchised by the disproportionate share of voice given to mothers after infertility; and 2) their immediate social circle – family and friends who were ignorant of the physical, emotional, and societal challenges faced by couples who are unable to successfully conceive and deliver a child together.
The catharsis that resulted from reliving and reflecting on my own nightmarish experience was purely a bonus. I now cherish the closeness developed with readers who’ve reached out from around the world. We share a deep understanding and bond as a result of the losses and trials we’ve faced individually and together.
How does infertility impact our identity?
How much time do you have? Our sense of who we are and how we fit in – or don’t – alters over time. The gawky growth phase, whether as an adolescent or as an adult going through complicated transition like infertility, are the most memorable – usually due to the mess involved. Amid it, we feel awkward, restless and just plain out of sorts. Choose your metaphor. A eucalyptus tree shedding its bark. An ugly caterpillar. A rumbling dark storm cloud.
The growth and change that accompanies these periods is sometimes fast and obvious, but it can also be imperceptibly slow, complicated by a society that doesn’t always know how to make sense of nuance or dimensionality.
As I wrote in Silent Sorority, “when a path isn’t clear, the natural instinct is to go with the herd. Only trouble was finding the right one. I was slowly separating from the ‘Trying to Conceive Tribe’ and from the looks of it I wasn’t ever going to be part of the ‘Mother Tribe’ – the working mother or the stay-at-home mother set. The schism between the two camps was now so whatever. I didn’t even fit into the ‘Childfree by Choice Tribe.’ I learned a new term. I was ‘involuntarily childless.’ How the hell was I going to locate that motley crew?”
And, then, almost like stars appearing in the dusk sky, I began to find my people. And soon there were constellations. Beautiful, bright and dazzling heavenly bodies appearing out of the darkness. Soon we became a network — from Australia, Slovenia, Michigan, England, New Zealand, Ireland, San Francisco, Israel, Canada, Rhode Island, South Africa, Ohio, Southern California, Boston, Seattle, New York City and many other places around the world.
One of the women I connected with was a PhD candidate from the University of Pennsylvania, Dr. Marni Rosner. Her research, Recovery from Traumatic Loss: A Study of Women Living Without Children After Infertility, makes clear women who experience infertility and do not go on to parent get short shrift not only in society but in research. They are left to cope without much needed support or understanding. This is made all the more difficult amid the deification of mothers.
You can read an interview with Dr. Rosner on my blog. I also spoke in New York City a few years about the impact of infertility in a brief TED-like talk. You can find the clip here.
And how does it impact our relationships? How do you navigate infertility with friends and co-workers who don’t seem to understand what you’re going through?
The impacts are many. Friends and co-workers mean well. But unless they have lived through the haunting heartbreak and emotional fragility of infertility, it can be hard for them to know what to say to a when you’re working hard to grow your family.
I offer this humble guide to share with friends and co-workers so they can get the basics right:
- Be careful about sharing other people’s stories. Please don’t enthusiastically tell your friend, family member or co-worker about someone who got pregnant naturally after years of trying or treatment. Hope is a good thing, but not when it can be interpreted as yet another performance metric. These stories can often backfire and further distress the loved one who is steeped in their own infertility mystery. They will likely walk away thinking: Good for her. It’s got nothing to do with my situation.
- Steer clear of offering medical advice or how-to tips (unless you’re a trained reproductive endocrinologist). Odds are very high that the couple involved has done their homework (and then some).
- Be a good and compassionate listener. It’s not easy for anyone to discuss malfunctioning sex organs. Follow your loved one’s lead. If you don’t understand something, ask gently for clarification.
- Try out these good responses to bad news:
- “I’m sorry, this must be really difficult. Do you want to talk about it?”
- “You’re probably sick of explaining this stuff to people. What is a good resource where I can learn more?”
- “This must be a very confusing and emotional time for you. How can I help?”
- “You don’t need any more stress or obligations in your life right now, so take as much time as you need. We’ll be here for you when you’re ready.”
- “Even though I can’t fully understand how you feel, what’s the best way to support you?”
- Know that there’s nothing lightweight about infertility treatments. With each step in the infertility workup, there are increasingly complicated medical protocols ranging from uncomfortable, invasive tests to a cocktail of medications that have unpleasant, sometimes dangerous side effects. Often, multiple surgeries and outpatient procedures are required in advance of the next phase of treatment.
- Understand that there is no shortcut for reconciling infertility. The heartbreak that accompanies each setback and loss is cumulative. While most people focus on the physical aspects of infertility, it’s the gaping emotional wounds that take the longest time to heal – and sometimes, they reopen when we least expect it.
Let them know that each of us comes to terms with infertility in our own way but there’s no one size fits all. With the warm support and understanding of the people around us, we will – one day – find a measure of peace and rediscover joy again. But, by all means: do NOT rush us.
Failed IVF and the taboo of infertility stories don’t often take center stage – why do you think this is?
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. As I’ve discussed with many of my friends who’ve live this experience there are many reasons.
Here are a few:
First, people are very uncomfortable with the subject because they don’t know how to relate to it. People are 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.
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. It’s important we begin to break down taboos and establish a culture, a language that teaches people how to handle the situation similar to the suggestions I made above.
You've said “Childless is a word I detest" – can you share more about this?
First of all, the word comes loaded with baggage and unkind stereotypes. I could find no evidence of the word ‘childful’ in the English language, so how and why, one wonders, did ‘childless’ get coined? It seems only to exist as a negative modifier. Furthermore, our culture often feels perfectly at ease demonizing those of us who fit the technical description: ‘has no children.’ My unease with the term childless started years ago. Beyond the stigma, let’s be straight. Any word with a ‘less’ tacked onto it is not steeped in goodness:
- Pointless (defined as ‘having little or no sense, use, or purpose.’)
- Worthless (defined as ‘having no real value or use.’)
- Aimless (defined as ‘without purpose or direction.’)
Are you detecting a theme here? Taken by itself the word less on its own means ‘a smaller amount of; not as much.’
I do not care to be described by an adjective focused on what isn’t in my life.
Above all, the word can be misleading. Children have and continue to play a role in my life. I adore my (now adult) nieces and nephews. My friend’s children are very much a part of my life. Even children I don’t know get a big smile from me when our eyes meet. I donate to causes that help children. So, again, how am I childless?
Childlessness and joy are rarely used in the same sentence – why is this and how do you help women navigate life after infertility?
It is one thing to come out on the other side of involuntary childlessness. It’s quite another to find joy or fulfillment. As my author friend, Jody Day, noted:
“The process of transformation isn’t comfortable, pretty, convenient, or fun. It’s one that we humans resist fiercely because it means letting go of what we know in order to become a version of ourselves we haven’t met yet.”
I often tell women in order to get through the worst of infertility you have to own or submit to your emotions not bury or deny them. I slowly realized that submitting to the pain, not trying to control or deny it, was the first step to healing. I’m also a big fan of films to help provide a sense of perspective and emotional healing.
Take the Pixar film, Up! With the lightest, endearing touch, the folks at Pixar devote the first few minutes of the film setting the scene for a love story. It starts at a tender age and endures through thick and thin. In a montage with no dialogue, we see Ellie and Carl cavorting, laughing, picnicking and planning a life together. Then the sequences reveal a major life changing event. In one scene Ellie is painting a nursery, the next she’s being comforted by Carl in a doctor’s office. The killer frame, though, is when we see Ellie sitting almost zombie-like in a chair in the backyard. A once irrepressible spirit she is immobile, inconsolable. (Still makes me tear up as I recall my own self as Ellie).
With just a few heart-stirring images, Pixar perfectly captured the loss felt by those of us who once joyfully set off to conceive only to be walloped by the unthinkable: infertility and all of the losses it inflicts. Resilient, Ellie and Carl forge ahead and we see an affection – a bond that was strong – grow even stronger as they lovingly look after each other in ways large and small. That’s just the first 10 minutes of the film.
As I’ve experienced and heard echoed around the world by women and men who have experienced it, infertility is not something you ‘get over;’ there is no closure. Instead you will ‘come to terms’ with it. Reminders of what might have been will remain, but the pain will subside. Time will be your ally. Also, for those just undertaking the journey of coming to terms with infertility, I encourage you to be gentle with yourself.
Wishing you peace, strength, resilience and reinvention.