Eight years ago this week I emerged from obscurity because of faulty reproductive organs and the failure of reproductive medicine. My introduction onto the world stage for a prolonged, painful ‘unexplained’ infertility experience came with a fair amount of hyperventilating.
It was, in a word, terrifying.
June 9, 2008, was a pivotal day in what had been a perfect storm of fear. That day I walked nervously into my boss’ office to inform him that my blog would be mentioned as part of a new health feature in The New York Times.
“Cool – what’s the URL,” he replied, his hands poised over the keyboard to locate the website.
“Uh, not exactly,” I said pacing anxiously. “It’s, uh, about coming to terms with … infertility.”
Minutes later I was back at my desk relieved to learn that my awkward and highly personal disclosure to a reporter would not result in losing my job – part of which involved carefully managing public relations.
With that very real fear put to rest I now had to confront an even bigger one: how my disclosure might affect how others viewed me. I had reason to be worried; the reporter told me she’d had a devil of a time finding women who would go on the record to discuss infertility.
At that time I had been blogging under an alias for just over two years. My motivation was simple. I wanted to explore and understand how the traumatizing infertility/fertility treatment experience had altered my world. I truly had no idea then that I would still be writing on the reproductive medicine topic some 10 years later. I’m not alone in my amazement.
Recovering from Reproductive Medicine
This past weekend marked an historic gathering of women: the first Global Sisterhood Summit. First to arrive and fueled by adrenaline, I burned off some energy with a long walk around the Vancouver water front.
Hours later I met Sarah for the first time. We stayed up until the wee hours literally finishing each others sentences. It was the first of many conversations that flowed effortlessly. The topics tumbled out: The life-altering impact of failed fertility treatments. The yawning black hole of trauma that threatened to swallow us up. The daunting challenge of facing life without children when it isn’t by choice. The lack of a cultural framework or social etiquette to process the losses. And that was just the beginning…
The next day I met Angela. We hopped into a time capsule and revisited our early blogging efforts following fertility treatment losses. She survived 3 IUIs, 2 laps, 4 IVFs (2 fresh, 2 frozen), lots of eggs but no implantation in what she describes as “rocky fibroidy soil.” She even attempted acupuncture, chinese herbal medicine, LOTS of daimoku, naturopathic diets – even RELAXING. No two lines ever materialized on a pregnancy test.
We marveled at how far we’d come in healing since the battle weary days when we clung to our computers, grateful to find women who gave us room to grieve. To bear witness to our emotional cratering. To virtually — in every sense of that word — hold our hands. To give us strength (on the very worst days) to simply get out of bed.
The three days of the Global Sisterhood Summit — with group dinners, walks and a breathtaking hike into the beautiful Lynn Canyon — was cathartic on multiple levels. At days end wine flowed and more stories spilled out.
One morning Cathy and I met in the lobby and headed into Granville Island’s bustling marketplace in search of lattes. What struck me as the conversation unfolded is that while it has been five and 10 years, respectively, since we released our dreams of ever conceiving, the buried emotions and scars from that dark and bewildering time live on inside of us.
When in the safety of this remarkable group of women I often felt an overwhelming sense of being thrust back into the chaotic, cold experience of navigating what we all agreed is, sadly, an inhumane and dismissive reproductive medicine industry.
An unfortunate but very real common denominator? We each confronted uncaring and clinically-focused reproductive medicine teams. Not even our gynecologists or primary care doctors have proven particularly sensitive to the hellish emotional fallout that arises when pregnancy is elusive. Seems no one in the medical world takes the time to consider that the query “have you ever been pregnant?” (a common question on the checklist of patient interrogations) can be an immensely triggering one.
As Kathleen asked in one group discussion: “Is it too much to ask of a doctor to actually read the patient file?”
Andrea chimed in: “Just as it takes a village to raise a child, it also takes a village to help someone when they can’t conceive — and that includes not only compassionate reproductive medicine teams, but also our extended network of family and friends.”
In short, the consensus was unanimous: The reproductive medicine world gets a failing grade in how it treats its patients. We are people — not organs or cycles — carrying dreams wrapped in complex emotions.
[bctt tweet=”The reproductive medicine world gets a failing grade in how it treats its patients. We are people not cycles. ” username=”SilentSorority”]
(Editor’s note: Expect more in a future blog post on how the lack of compassionate care and questionable ‘do no harm’ practices are getting a fresh look — thanks to some courageous and truth-telling Australians.)
The New Village
With no palliative care we’ve each had to make do and chart our own paths. We’ve had our share of false starts — the stories of which led to ready laughter on many occasions during our Summit. In fact, I’m not sure I’ve ever laughed so hard and with such carefree abandon coming so quickly off such difficult, soul-baring talk. It’s a testament to all that we could gently transition so easily with a kind smile, a warm hug and a comforting chorus of affirmations.
“The idea that you will never be a mother can knock you completely off your feet. You feel cheated, frustrated, and no longer sure of your place in society, your family, or your circle of friends. Now…imagine you could spend time with someone who really understands how you feel, who lets you express all the things that once seemed self-indulgent, or just plain crazy, and who confides that she once felt that way too.”
Well, it’s pretty awesome. Upon her return to Washington, D.C., Cathy shared this response to the weekend in a blog post titled Sharing Loss Together:
“Both my heart and mind were bursting with feelings of acceptance, deep understanding, forgotten sorrow, and overwhelming compassion for each other. In a much more positive rendition of musical chairs, each time we sat down to break bread with each other, I found myself next to another awe-inspiring courageous woman, and had another magical and life-altering conversation. To feel truly seen, understood and even ‘held’ in someone’s heart, well, it just about brought me to tears on several occasions.
“There were so many amazing conversations, epiphanies and enlightening a-ha moments that frankly I am still processing it all. It was a lot to take in.”
It sure was. My head is still swimming. It will take some time to absorb the multi-faceted, provocative insights expressed. (Editor’s note: Once I have some technical difficulties ironed out I can share one particularly enlightening discussion recorded during our last morning. It would be a great basis for a Twitter Chat. More on that idea to follow.)
Suffice to say, my heart was full as I boarded the plane bound for California.
On this ‘coming out of the shadows’ anniversary, I am in awe of what can happen when we tell our stories. I have new appreciation for how deeply we can connect when we are with those who have faced similar emotional traumas or ventured uncertainly down a similarly uncharted path. It’s powerful, plain and simple, to be in the company of women dedicated to shaping a safe environment for those who come after us.
Welcome your thoughts…