The Human Side of Failed IVF
So for some time now I’ve been intrigued by the different ways countries treat the infertility experience. In the U.S. there’s a concerted effort by the commercial infertility industry to fund groups like RESOLVE and the American Society for Reproductive Medicine. The objective: to grow the market and extend customer reach.
[bctt tweet=”In the eyes of the profit-driven #infertility industry we aren’t humans with emotions and dreams seeking compassionate care and answers; we’re organs or cycles to be treated #20MFailedIVF” username=”SilentSorority”]
Where’s the Human Aspect in Reprotech?
While the industry presents its work under the guise of helping people the ‘helping’ part only concerns the sale of expensive, invasive treatment. Sadly, it’s the exception rather than the rule for clinics to engage with customer/patients as humans — not lab experiments.
A purely clinical approach results in a shocking lack of humanity. It also puts the patient/consumer in a box of sorts. The procedural focus creates an implied assumption that the clinic has no accountability for the human toll of treatment. Clinics abdicate responsibility for the harm they inflict because they are only there to serve up a high-margin procedure. Take it or leave it. If you ‘leave it’ you’ve got no one to blame but yourself.
This sentiment has crept into our social consciousness as well. The shock of not being able to conceive and the implied blame for ‘giving up’ on treatment, not surprisingly, leads to shame and, often, secrecy — not to mention added layers of emotional distress.
Human Toll Is Real
Cathy and her husband write honestly about the human challenges that accompany infertility and coming to terms with failed IVF. This past week Cathy turned a professional coaching seminar into a test bed for “a coming out of sorts.” She made a brave decision to share “the fact that I had endured fertility treatments and all of the shame, anguish, and heartache that goes with it.” She wrote:
The literal inability to get pregnant … though others can’t ‘see’ the loss (as contrasted with going to a funeral) often gets overlooked and ‘stepped over.’
Cathy’s experience (like mine and many others I’ve come to know) is only now getting an audience.
Our friends in the UK joined in an effort recently to reveal the human toll that accompanies infertility and failed IVF through an awareness campaign called #HiddenFaces
Kudos to Kelly and Jessica and others who generously shared their stories. You can hear them here:
Their honesty and courage may help introduce change and new understanding of the human side of pursuing fertility treatment.
I’d also love to see U.S. organizations do a better job of highlighting the whole person infertility experience versus the abstract medicalization of reproductive medicine.
Five Years and Little Progress Made
Though it’s been more than five years since I made this video on the impact of failed fertility treatment we haven’t seen the kind of industry change we need.
I’m thrilled that women have been willing to step forward to offer peer to peer support. It’s invaluable as we move forward and process our grief. That said, we have more work to do.
A Call for Better Care
We need:
- to fund education efforts about the limits of human reproductive medicine.
- more research into the underlying causes of infertility.
- better prevention and diagnosis.
- to require palliative care for patient/consumers who are not good candidates for IVF.
- to call for new peer-reviewed standards of reproductive medicine care and stop clinics from experimenting willy-nilly with protocols.
- longitudinal studies on the impact of high-dose hormones on all involved.
- to call out providers that operate with a business focus on selling one-size-fits-all cycles.
- to reveal the parties funding lobbying efforts for insurance coverage for expensive, invasive treatments with a high failure rate.
- a campaign that reaches family and friends who are unfamiliar with the devastating emotional and social impact of fertility challenges.
Now over to you, readers…what else would you like to see?
Klara
I haven’t heard of #HiddenFaces before… I enjoyed listening to around 10 videos, they are awesome! Thank you for the link.
And I watched your video too, it is great. I miss you!
Elaine
#HiddenFaces is a great campaign. I discovered it on Klara’s blog and then followed her reference to your blog. Thanks for posting the links!
Different Shores
I’m so pleased that the toll of failed IVF is finally getting a wider audience. I so agree that we need to educate people about the limits of human reproductive medicine. The number of times I can recall friends saying ‘I’ll just have IVF if I have any problems’, and the fact that absolutely no one I know is aware of the failure rates, astounds me. I love your Call for Better Care, it is absolutely spot-on.
Pamela Tsigdinos
Thank you! The comments here (Klara, Slovenia; Elaine, Austria; and yourself, Ireland) plus our friends in the UK contributing to this post demonstrate, definitively, that the world is getting alignment on this topic.
Jess
Thank you for posting this, and these videos. Especially yours. I am really feeling the toll of my failed infertility journey lately, and the toll of waiting through the amorphous adoption process. I wish that more people understood that “hang in there, it will happen” is not actually true and that the toll of experiencing no success for so long is very real. I wish that there was more honesty about the side of IVF that doesn’t go home with a baby, but that wouldn’t be a great marketing strategy. I wish I didn’t feel like a horror story so often, but then posts like yours make me realize just how much good company I have in being on the other side of IVF without a baby. So many people think it’s a guarantee, if only you “stick with it.” How harmful is that?
loribeth
These were wonderful videos (yours included!); thank you for sharing them! The Brits do see to be slightly more advanced on these matters than we are in North America.
I completely agree with your call to action too.
What Will Life Be Like if IVF Fails? – Silent Sorority
[…] Cathy Broadwell and I first discussed prioritizing the emotional and social impact of IVF failures a year ago. We review what we learned in living through the ‘letting go’ challenge. We also share what we learned in making a new life post IVF fails. […]