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.
As I wrote in Finally Heard, the ebook followup to Silent Sorority (the first memoir about infertility not authored by a mother — but far from the last):
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.
As Lisa Manterfield first observed in her latest book — and echoed in our discussions in Vancouver — there is a very real need for collective healing and recovery time:
“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…
It’s difficult to explain the power of this gathering. To sit with a group of women and know that we all understand one another on a deep level was both comfortable and comforting. It’s not often I get to meet a group of relative strangers and not have to worry about them asking awkward questions or not understanding my answers. It made me realize how much I bend my truth in social gatherings and how freeing it was to have open and honest conversations all weekend.
You continue to infuse clarity and such heart, Lisa. Very grateful for your voice and vision.
I’m sorry I missed the summit. It sounds like a wonderful meeting of the minds.
It was, Jinny! A true mind meld. Now that we have our format it’s only a matter of time before the next one…
It seems impossible that it’s already been EIGHT YEARS!! I so clearly remember the day your photo popped up onto my computer screen on the NY Times home page, and how thrilled I felt, not just that I “knew” you ;) but that women like us were getting such prominent recognition, FINALLY. Then again, it will be FIFTEEN YEARS next month that I walked away from infertility treatment, and first found my tribe on a message board (blogs being pretty much non-existent at that point). I will be meeting up with one of the women I met there, for the second time, almost 15 years to the day since I made that first post on that board (now long gone).
What a long, strange trip it’s been… but the wonderful kindred spirits I’ve encountered along the way, like you & her and the others in the Global Sisterhood, have made such a huge difference in my life. I am still sad (& jealous ;) ) that I didn’t make it to Vancouver, but will look forward to the day when we do finally meet (as we surely will)! :)
So there have been eight years since I first “met” you, in NYT article. I remember that a completely new world opened to me, after reading that article. After it, I started to read your first blog.
I am glad you had a wonderful first Global Sisterhood Summit.
kind regards,
Klara
Eight years, two continents and, visits in what is it — five or more countries now? Slovenia, Croatia, Italy, the Czech Republic and the U.S. — all from a New York Times story. Your friendship is a true gift!
Brava to all who are “dedicated to shaping a safe environment for those who come after us.”
I am so glad it went well. And, whilst I am sure that at times it was painful to revisit and perhaps relive some of your experiences, I am so glad that those deep connections were able to be made together on this weekend. You were already a group of powerful women – but I’m sure that together you are greater now. I was with you in spirit – and at the bottom of those wine glasses!
Next one, New Zealand?!
That’s it! You’re officially on the organizing committee, Mali. We have some wine drinking and stories to catch up on…
I’m thinking you might need more than just a weekend …
This makes my heart so happy! Knowing that there is a place of comfort and mutual understanding, a tribe for people like us, where we can just be without feeling the need to have our guard up gives me so much hope! I really hope I can make it for the next gathering!
Kathleen’s quote particularly resonates with me after a power tool related mishap landed me in the urgent care last month. (I wrote about it here: http://bentnotbrokenblog.blogspot.com/2016/05/infertility-at-urgent-care.html)
That question!! Thanks for sharing your blog post. I can’t wait to meet you in a future gathering, Kinsey.
Hi Pamela,
I have never commented before, but I have been following you for 6 years. Your work has been absolutely life giving to me in my recovery. For that, I am forever grateful. Through you I found all the amazing bloggers you were with at this summit. Each of whom have served in different ways as a lifeline along my path to recovery. As I read this post, the tears would not stop flowing. Imaging you all together brings such joy and gratitude to my heart. Thank you, Pamela and the amazing Sisterhood for your courage, for sharing your life and being the most amazing tribe of women to belong to. I am so very grateful!
Dear Kristina,
So appreciate your kind words! Very happy that you’ve found some peace and acceptance through the years reading along and hearing our stories. Sending a big hug your way!
I can feel the emotion through the blog and comments from those who were there. As Lisa said ‘To sit with a group of women and know that we all understand one another on a deep level was both comfortable and comforting.’
I was lucky to meet Lisa recently and we experienced this, I hope to join you all next time.
What also strikes me very strongly is how we are all happy to work together, there’s no competition between us, only co-operation. We each want to make a difference to those who come behind us, and together we are stronger.
We will meet one day, Lesley! I’m sure of it. Until then we’ll continue to help each other and, yes, cooperate and collaborate each step of the way to ensure that our community stays strong!
I’m so glad this gathering happened. That you all came together for what sounds like a new level of healing. May there be another summit too.
The healthcare industry is under general fire for the lack of compassion shown to most patients. But the pregnancy question is one that still leaves me shaking my head. There is a better way to get this information and there’s questions about whether this is always required.
Oh, Cristy, were your ears burning? You came up more than once as an example as the best kind of caring soul we’d like to see more of in our daily lives.
I’m still processing it all. There were too many moments to count where I felt my “normal” reflected all around me – finally!
The collateral damage of our losses is so significant, as Lisa alluded to in her comment. Trying to find common ground in mainstream conversation while remaining authentic feels like climbing Everest. After literally years of this, it was beyond amazing for me to have a weekend “off”.
I feel many things, glad for our new connections, hopeful for my future, cared for, and most of all, seen.
I continue to turn over the ideas and marvel, Sarah, at the deep connections we all made. Thank you for flying across the country and stimulating so many important discussions!
Back in the office this morning, having extended my Global Sisterhood adventures with a much-needed vacation. Thank you for the summing-up of our weekend together. I am still processing, still acknowledging my takeaways, but will say that I am flooded with gratitude for the amazing women who gathered. I think our most repeated phrase was “This is a safe space.” Love, acceptance, support, encouragement were in abundance. Although our stories differ, our capacities for compassion and reinvention are similar–and inspiring. I am honored and humbled to be included in this group. Thank you to you and Andrea for making this happen! xo
Wow, I am so happy to read this! May there be many more of these meetings to come…
This is my first time participating in a blog of any kind,I don’t know if I am placing this comment in a way in which it will be read by anyone, but here goes….
I am newly joining the silent sorority and like so many others here, I felt increasingly isolated before I found this community. The sense of relief is overwhelming, the feeling of kindred spirits filling a painful empty space that society doesn’t acknowledge, much less understand. I’m simply overcome, and profoundly grateful.
Dear Sharon,
Thank you for your comment. So glad you found us. You are most definitely among friends here who understand you. xo, Pamela