The experience of not being able to have children when you wanted them will always be life altering. And it has the capacity to inflict a level of grief that is, among other things, transformative.
The experience of wanting children and not being able to have them does not always have to be so inhumane, however.
What do we do when evolution is so clearly needed? When we are driven by the common thread of leaving this experience more truthful and less pulverizing than we found it? One doesn’t need to have their own children to have a vested interest in improving things for the next generation, that’s for sure.
We start talking.
Recently, a group of your friendly neighborhood childless not by choice bloggers, authors, advocates and activists got together for a cyber conversation. We reflected on how the presence of IVF has impacted our lives and views, and began to rumble with changes we’d like to see.
In this conversation we each ruminate on the imprint IVF has made on our lives, and at around minute 35 you can see our group conversation as we assert both the medical and social changes we’d like to see. (And I forgot to introduce myself so in case you find yourself wondering, at the beginning of the video I speak second, right after Pamela)………
Pamela Mahoney Tsigdinos from Silent Sorority and Reprotechtruths.org, Lori Kohut Bianco from The Road Less Traveled, Lesley Pine at LesleyPine.co.uk, Civilla Morgan at Childlessnotbychoice.net, Nicci and Andrew Fletcher from the We Are Worthy Summit and the Childless Not By Choice Magazine, Sarah Chamberlin from Infertility Honesty and Jody Day from Gateway Women
Bernice Smith – IVF is 40 video post
Jody Day – Where are the childless voices in the celebrations over IVF’s 40th anniversary?
Pamela Mahoney Tsigdinos – IVF is 40 – Untold Stories Cast Milestone in New Light
Lori Kohut Bianco – Happy Birthday, Louise Brown
Lesley Pine – IVF is 40 – Forgotten Voices Speaking Out
I understand that the existence of IVF has helped a lot of people achieve parenthood who otherwise wouldn’t have. I also understand that the voices of the success stories will be heard loud and clear, and even adulated in the coming days.
Not everyone is a fan of a one sided, incomplete narrative however. The multiple losses and ramifications resulting from IVF also need to be heard.
For me, Pamela Tsigdinos’ proposal “What are your asks?” was a luscious one. It also made my neurotransmitters fizz from here to high heaven. Because really, what DOESN’T need to change?
While it may seem we’ve come a long way in 40 years, I propose that in many ways we haven’t. The presence, and more so the misrepresentations surrounding IVF have made the experience of involuntary childlessness more overwhelming and disenfranchising than ever before. The disease of endometriosis is now more overlooked due to the presence of IVF as well, even though IVF is not a solution for the vast majority of endometriosis components that impede one’s fertility.
Needing to take more time to contemplate the vastness of it all, I pondered what my reproductively improved world would look like, both medically and socially………let’s have a look inside, shall we?
Infertility education is included alongside sex ed. The high failure rates (79%) of assisted reproductive technology cycles are included in the curriculum.
Children grow up seeing the 20% of the world’s population that is involuntarily childless live fully and authentically, openly speaking their minds and hearts.
Young people are aware that not everyone who wants a baby can have one – it’s not when you become a parent but rather if.
Young women are aware that 35 is a more realistic cutoff age than 40 for having children.
Gynecologists are more thorough and diligent in screening for endometriosis and other fertility issues.
The mindless social pressure to have children ebbs, thus allowing those of us who want to decide for ourselves if we want to have children to do it in a timely fashion, free from having to ward off scolding baby pressure onslaughts.
When people have trouble conceiving and carrying pregnancies, they find themselves in a medical system that prioritizes diagnosing. And then, if the diagnosis calls for it, less invasive treatments.
Longitudinal studies disclose potential physical risks and mental health risks, both short and long term, of engaging in fertility treatments, especially multiple cycles.
The fertility industry has made itself medically and ethically appropriate, so insurance companies can justify covering treatment.
Fertility patients wait for treatment in waiting rooms free from panic attack inducing PTSD triggers.
Just like first and second time IVFers, 4th and 5th time IVFers are given the appropriate care and attention by medical staff.
Patients going through fertility treatments and other related procedures get casseroles and other care from their fellow humans.
People who can’t continue treatments are treated like patients. The fertility medical field offers palliative care and access to a support system of people who have walked in their shoes.
It is understood by all that one’s resources to build a family with children – financial, emotional and otherwise, have their limits. The shortsightedness of the damaging “never give up” message is also understood.
It is understood that the vast majority of people, 90%, who don’t have children wanted them.
“Do you have kids?” is considered an inappropriate social overture.
It is understood that people make massive efforts to have children that are appropriate for them and their medical diagnosis, and therefore are not seen as complicit in the loss of their children.
The needs and views of the involuntary childless are acknowledged and integrated into relationships with friends and family.
All platitudes and dismissals surrounding this experience – “Maybe you just weren’t meant to be a mother”, “You can have my kids”, “What do you do with your free time?”, “At least you can travel now” and so forth no longer exist.
The losses of one’s biological children, parenthood and grandparenthood are openly acknowledged. And automatically warrant empathy.
The social and societal contributions of people without children are acknowledged and valued.
The world is a friendly, inclusive and validating place for people without children, especially those of us who wanted them but couldn’t have them.
Silence, Inauthenticity and conformity are no longer expected from the involuntarily childless.
And, instead of being subjected to miracle baby stories and adoption pontifications upon the wrenching point of stopping treatments or realizing they will never be a parent, people hear something like this from their fellow humans: “I’m so sorry for what you’re going through. I know a few people who went through something similar. They took the time to grieve and had plenty of support from their friends and family. It’s been a tough path, but they are slowly making their way.”
A much more appropriate world, huh? Roll up your sleeves fellow humans, we’ve got some work to do.
14 thoughts on “Childless Voices Resound on IVF’s 40th Anniversary”
Amen!!!!!!!!!! I’d add to the wish list: “those who were successful with ivf don’t think they’re suddenly the experts on how to make it work and therefore think they can tell us how to feel/act/etc” and “those with secondary infertility stop acting like it’s the same or that they understand”.
I totally hear you! When people are successful/lucky/dodged a bullet or whatever you wish to call it, not just in baby making but in other aspects of life, it’s odd how so many assert a concrete reason (that usually validates their efforts somehow) instead of acknowledging the obvious randomness involved. “We were just lucky” or “It could have just as easily gone the other way” seems to be reserved for the world’s more humbled souls.
YES! A thousand times yes!
I’m glad you agree:-)
Well said. I would add that young men should also understand the limits of human fertility. I have met couples who are 35-38 and husband is all about “maybe in a couple of years”. Then they are surprised when they don’t get pregnant at the first try.
Great amendment, Sofia! My husband kept expanding his business in my mid thirties, and even though I didn’t have the loudest ticking biological clock before we started trying, I had to start to push him a bit. Turns out our immunological and genetic issues with fertility would have been present at any age, but still. Just saw the exact scenario you’re describing on TV the other day too.
As I’ve said on some of the others’ blogs — it was such an honour to be included in the Childless Voices video with you & all the other amazing “friendly neighbourhood CNBC bloggers” (lol). 🙂 — looking forward to doing it again soon! 🙂
IVF has come a long way in 40 years — but there’s still so much more that can & should be done to ensure better outcomes for everyone who undergoes ARTs — whether or not they get to take home a living, healthy baby.
It was an honor for me too, LB! Here’s to hoping our work contributes to a better future version of ART.