Life After Infertility: One Decade, Many Thoughts
by Pamela Tsigdinos
Life after infertility is not an easy but a new dawn that awaits, as those of us who have lived it know well. Recently, an interview request from an Australian editor provided a chance to revisit 10+ years of experience and the wisdom it conferred.
Reproduced with permission
1) Pamela, can you share your story?
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, I’d had a year of carefully timed sex with no positive home pregnancy tests. It dawned on me, slowly, that fertility operated on a much broader and grayer spectrum. My primal urge to procreate grew stronger as the months slipped away. I searched out biological knowledge and pursued all recommended tests. First, I had a hysterosalpingogram (HSG) to rule out fallopian tube blockage.
My husband underwent screenings. 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.
Decoding Our Biological Mystery
Moreover, I had multiple intrauterine inseminations (IUI) combined with Clomid and pre-screened sperm. I added Chinese herbs, yoga, more diet changes, chiropractic adjustments, and large amounts of red raspberry leaf herbal tea. Finally, we’d saved enough money for the expensive and most complex of the fertility treatment regimens: intracytoplasmic sperm injection in vitro fertilization (ICSI IVF) and subsequent frozen embryo transfers coupled with acupuncture.
In the wake of hopeful signs — my ovaries pumped out eggs, those eggs successfully fertilized, beautiful embryos blossomed — we allowed ourselves to dream. And I mean dream BIG, about finally holding our child in our arms. Failed IUI and IVF cycles shattered our dreams time and again. Our 30s amounted to a decade of of unsuccessful attempts to conceive, failed treatments, and worst of all, alpha pregnancy miscarriages. Meanwhile, baby bumps and mom’s clubs became all the rage. I found myself a misfit with no social support network.
2) When did you make the decision that it was time to move away from IVF treatment?
There was no epiphany, no dramatic denouement in my 40s. We were not driven there by a deadline or a master plan or even an entirely drained bank account. Our move away from treatment? It 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.
News headlines about IVF miracle stories fed a little voice in my head: just one more treatment cycle; one more round of acupuncture; another laparoscopy; one more blood test. Is there a new factor we hadn’t considered or addressed? All the while, the doctors scratched their heads with no clear explanation for our infertility. This confused us and dampened our hopes further.
While a new clinic put us in the queue for another IVF round, my husband and I faced an excruciating reality. The emotional pain from 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. She informed me matter-of-factly: “your IVF procedure needs to be cancelled; it overlaps with your 40th birthday.”
High-Risk Geriatric Mother?
As an imminent ‘high-risk’ geriatric mother-to-be, I had to get a mammogram and other tests completed before I could go back into the queue. The words ‘high risk’ and ‘geriatric’ echoed in my head and fueled new concerns. I worried I’d put a future child in jeopardy, face a problematic pregnancy.
Stressed-out, I wondered 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. My husband and I had exhausting conversations. We consumed huge amounts of reading material on coping with infertility. We began to loosen the tight grip we had on our increasingly fragile dream. For months and years afterwards I had to resist the ever-beckoning siren song of the ‘fertility’ industry’s latest marketing. It was not easy.
Difficult Decisions, Disenfranchised Grief
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 support for our disenfranchised grief.
Each IVF miscarriage felt akin to returning from a funeral home after arranging the burial of our children. We had to say goodbye to all the dreams we had for them while the world continued around us, completely oblivious to our losses and emotional struggles.
3) What was the most challenging part of IVF for you? And what advice do you have for women? What is the reality?
The emotional component is by far the most challenging. Looking back, we felt a sense of shame, urgency and single-mindedness. The clinics had a strange way of depersonalizing the significance of why we were there. Their ‘medicalization’ of our infertility made it difficult to fully integrate our deepest feelings. This, later coupled with grief and social isolation, was daunting. Perhaps most cruelly, prolonged treatments, losses and interventions stole our innocence. They dominated our life.
We mustered everything within our grasp to put an end to infertility. With no emotional help and sales pitches for additional treatments we were kept in an endless round of medical roulette. Our hearts grew heavier.
I’m taken aback, still, by the glaring lack of readily available compassionate care for infertility. There’s no independent health or counseling services to help couples review and assess what’s in their best interests. Rather than treat the whole person, “fertility” clinics treat infertility patients as clinical specimens or bank accounts. We’re moved through a system of increasingly complex and expensive treatments divorced from the emotional juggernaut that accompanies diagnosis and treatment.
Emotional Tsunami, Clinic Callousness
In the early years I did a good job of suppressing my denial, loss and grief. I realized in my mid-40s that it’s far healthier to address it. Some days were clearly messier than others. Today I’m wiser about the realities of treatment failures and infertility heartbreak.
Know that clinics don’t always fully understand the underlying infertility causes. They can be far too transactional and IVF procedure driven. Many are also too quick to offer (or sell) patients experimental, minimally tested add-on procedures.
Outside of the clinic, I’m routinely reminded of society’s indifference or ignorance surrounding the trauma of those who can’t conceive. Often, we’re tortured by the blame inherent in this conventional wisdom: ‘you didn’t try hard enough.’ Nothing could be further from the truth.
With lots of time and reflection I finally surrendered my sadness and frustration at living a life different than the one I had hoped for … accepted my body for not functioning on demand … and summoned forgiveness for those who inadvertently wounded me with their infertility insensitivity, I reached a state of peace. I embraced the life I have. Freedom and peace comes in accepting that which will never be, so life can move forward.
Moreover, it’s important to advocate for truth and transparency about Mother Nature’s limits and reproductive medicine’s shortcomings. I truly respect those in the medical world committed to responsibly diagnosing and treating conditions that lead to infertility. But, we also need to have a compassionate off-ramp and a soft landing for those who face what a doctor friend of mine calls ‘a reproductive death.’
Much like those who get other life-altering medical diagnoses (cancers, amputations, degenerative neurological or muscles diseases, etc.) we need support systems built into care. This is so when it becomes clear that no amount of expensive intervention will result in a live birth, patient/consumers will not be abandoned. In fact, providing early education and screening about biology’s and medicine’s limits early will allow women and men to work up a plan. They’ll be equipped to make informed decisions well before reaching crisis stage.
IVF Not A ‘One Size Fits All’ Panacea
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 who confront infertility to find peace. It’s far healthier to get on with the business of life rather than remain captive to clinics in the business of selling cycles.
But, I do not want to minimize the body blow to our culturally shaped expectations and the work and emotional gymnastics associated with finding a new identity.
4) What was your experience with egg freezing?
Clinics eagerly promoted egg freezing as I began my life after infertility and on the eve of menopause. Since there are many similar tactics and protocols involved, I have written about its limitations, health risks and the misleading marketing associated with it. You can read two of my pieces in WIRED as well as FORTUNE magazines.
Suffice to say, while I believed I was an informed patient, it was only years later I learned how haphazard reproductive medicine truly is and how much of today’s reproductive treatments (including egg freezing) are still a mystery without the controls found in other clinical procedures. A former American Society of Reproductive Medicine ethics committee member George Annas shared this startling assessment in a PBS Frontline interview:
“What you see is a number of very highly successful clinics viciously competing for patients. desperate to get a baby. So you have a variety of [clinics] pitching their wares, their success rates, their new technologies, their cutting edge technology to this highly susceptible group of infertile couples who are almost willing to try anything, and almost pay any price to get a baby.
“In general, when you want to do a new procedure in assisted reproduction, you just do it…there hasn’t been what you have in cancer, for example, or other major diseases where you have long periods of 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.”
5) Talk us through your book Silent Sorority – and did you expect it to be award winning and to connect with so many women in your life after infertility?…
Week by week and month by month, the chains that bound me to our next expensive infertility ‘fix’ began to chafe.
Writing Becomes 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 the body’s inability to deliver a much wanted child, but by a heart and soul tortured with 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 a 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 to tell “our” life after infertility story.
Changing the Narrative
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. I felt was as though I didn’t have a choice. Writing 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 in my life after infertility. I cherish the closeness developed with readers who’ve reached out from around the world. We share a deep understanding, a bond as a result of the losses and trials we’ve faced individually and together.
6) And tell us about your follow-up ebook, Finally Heard?
It’s not easy today to accept that reproductive medicine has limits. Nobody wants to be perceived as a quitter. The complexities we face today played into why I was compelled to sit down to write Finally Heard. I wanted to chart the next stage of my journey — the part where I began to realize the worst of my grief was behind me, yet the rest of my life lay ahead. I also wanted to bring in other voices to illuminate life after infertility.
Society’s ‘magical thinking’ has bred an expectation of parenthood that makes pushing forward in a different direction seem like giving up rather than succeeding at something truly remarkable: reinvention.
In Finally Heard we share what we’ve learned. We not only offer camaraderie and celebrate new beginnings; we ensure the next generation will be well informed and benefit from lessons learned. Our community demonstrates there are many ways to express the ‘mothering’ aspect of ourselves. There’s much work to be done in the personal, medical, cultural and political spheres. The topics discussed:
- the transformative impact of infertility (one that most of us are completely unprepared for), including the effect it has on our relationships with friends and family members;
- the ‘blind spots’ and hidden biases we all subscribe to, often unconsciously, which set us up for the culture wars that pit parents against non-parents;
- the pitfalls of the IVF industry, which remains highly unregulated in many countries while raking in money from desperate couples, despite ART failure rates in the range of 70 to 77 per cent;
- the social stigma faced by those who leave treatment without a baby;
- the ‘indescribably delicious’ feeling of connecting with others in the same situation (often through the Internet) – ‘kindred spirits’ who help create a healing environment that allows many to move forward; and
- the “weirdness of being a childless woman in a culture where, ‘if you’re not a mother, you don’t rate’…
For the benefit of all, we need to rethink how we value and characterize the contributions of those who are not parents. You’ll find questions at the end of the book to prompt further discussion about life after infertility.
7) 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. That’s typically 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. Furthermore, healing is 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?”
Finding My Life After Infertility Tribe
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, England, New Zealand, Ireland, Israel, Germany, Canada, Switzerland, South Africa, and locales around the U.S. 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, broke new ground. It makes clear women who experience infertility and do not gone on to parent get short shrift. This happens not only in society but in research. We are left to cope without much needed support or understanding. Life after infertility is made all the more difficult amid the deification of mothers.
Furthermore, if you prefer the video format, she and I spoke in New York City a few years about life after infertility diagnosis in brief TED-like talks. You can find the clip here.
8) 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.
How Can Friends and Co-workers 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. 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 so 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. They range from uncomfortable, invasive tests to a cocktail of medications that have unpleasant, sometimes dangerous side effects. Many need multiple surgeries and outpatient procedures.
Understand there is no shortcut for reconciling infertility. The heartbreak that accompanies each setback and loss is cumulative. So, while most people focus on the physical aspects of infertility, it’s the gaping emotional wounds that take the longest time to heal. Sometimes they reopen when we least expect it.
Let them know that each of us comes to terms, makes a life after infertility in our own way. 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.
9) 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. This allows us to navigate and move through them with either social celebration or social healing and empathy.
Infertility? Whisper It And Everyone Runs For The Doors
Few know what to say or how to respond to infertility. Why?
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.
The basis for human culture – civilization – involves creating ways for people to relate to each other. Infertility simply does not have sufficient culture or language associated with it. Accordingly, people misdirect their concerns. They offer what they think are quick fixes, like: “Well, what are you waiting for? Get to one of those IVF clinics; their websites are full of success stories.” Or “why don’t you adopt?” Worse still, they dismiss infertility entirely.
To clarify, they may think they’re being helpful but, in fact, they’re inflicting pain. That’s why it’s important we begin to break down taboos.
10) Your blog post “Childless is a word I detest” – can you share more about this?
First, as I’ve shared, the word comes loaded with baggage and unkind stereotypes. I could find no evidence of the word ‘childful’ in the English language.
Moreover, ‘childless’ 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 discomfort with the term 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.’
However, I do not care to be described by an adjective focused on what isn’t in my life. 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. I donate to causes that help children. So, again, how am I childless?
11) Childlessness and joy are rarely used in the same sentence – why is this and how do you help women navigate life after infertility?
So, 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 fellow author and 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.”
Above all, 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.
Life After Infertility: The Power of Films
I’m 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 Carl is comforting her 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; I identify as Ellie).
With just a few heart-stirring images, Pixar perfectly captured a complex loss. 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 in their life after infertility. We see an affection – a strong bond – grow even stronger. 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: infertility is not something you ‘get over.’ There is no closure. Instead you ‘come to terms’ with it. Reminders of what might have been will remain, but the pain subsides. Time will be your ally. Also, for those new on the journey of coming to terms with infertility, be gentle with yourself.
I wish you all peace, strength, resilience and reinvention.