Being Human in Dehumanizing Places

In a past chapter of life, I advocated for doctors, including specialists and occasionally the top-in-their-field types, when they got sued or called up by the college governing their conduct for complaints or investigations.   I got compliments from those clients for my compassion and professionalism with them.  My favourite compliments were not on my success in navigating their legal and professional disciplinary troubles, but for helping them to feel more at-ease in an otherwise unnerving experience.  One physician once said I helped him feel human in a very dehumanizing process.

Funny, that’s what I would like from my doctors when I’m in a room, vulnerable and often in some state of undress, with them.  To cling fast to my humanity, dignity and self when poked, prodded, treated and diagnosed by  someone who is never in any state of undress at the time.  Yet that’s so rarely what I get.  I often dissociate and feel alone, lost, invisible and silent (or silenced).  I suspect I’m not alone.

Where is the quid pro quo in all of this?

When the LP and I first talked about trying to conceive (in 2009), I gathered up my courage and went to my doctor to get all of the pre-conception planning testing done.  My doctor was so encouraging, despite my being 39 at the time.  It took us over a year to conceive (and only after I went to acupuncture – best health and self-care decision ever).  When I did, I went to that same doctor (he’d been my doctor for years).  I had recently turned 40.  He said, in short:

“Don’t get excited.  You will likely miscarry.   Also, your risk of having a child with Down Syndrome is very high.  You need to think about that, since people with Down Syndrome nowadays live a long time and you will have to think about how to care for someone who is fully dependant for his or her entire life, after you are gone even.  I don’t do any prenatal care and since your risk of miscarriage is so high, the Ob won’t see you until your second trimester.  To whom do you want me to refer you?”

Needless to say, that jerk was no longer my doctor.  It took me 6 months to get another one and in the meantime, I did lose that first baby and because I had no doctor, that meant going to the ER and finding out our baby was dead in the hospital.  Alone.  The LP was not allowed in for the ultrasound.  I wanted to die, then and there.  Dr.  Jerk had been right.

In short, my  whole infertility/recurrent miscarriage journey got off to a pretty rocky start.  And that shaped my experience in communicating with doctors.  I saw this during my sixth pregnancy (our last loss – September 2013), when after our first early ultrasound I argued with my doctor about getting a follow-up ultrasound.  She refused.  I pleaded.  She refused, saying everything looked fine according to the sonographer and I had to wait for the nuchal translucency screen in 5 to 6 weeks and calm down.

Ten days later, I went back and she still refused.  Until, fighting back tears and then choking on my words, I pleaded “I’m just afraid this baby has died.”  She gave me a stat requisition at the sono lab in the same medical complex.  I couldn’t get in until the next day.  That was the longest ultrasound appointment of my life (literally –  I was on that table just shy of an hour).  The LP was out of town for work.

At first, things looked promising.  Baby was obviously bigger.  “She’s a growing concern” said the technician doing the scan.  I got excited.  I had been wrong, thank heaven, I thought.

Then I saw what no mother ever wants to see.  Baby was not moving.  Baby was bigger but not moving.  And the technician could  not find a heartbeat.  Of course, she did not admit that.  “I’m working on it, honey.”  She must have said that five times.  But I knew.  I could no longer see that flickering pulse on the screen.  And so it went.  She tried everything.  Finally she had the sonographer (the doctor) come in.  They did a transvaginal scan to confirm what I had by that point known for 48 minutes.  Our baby had died.  The doctor estimated it had happened within the day or two before and was clearly puzzled because the prior report looked good.

When I went back to see my doctor the next morning, she looked sad and sheepish.  And said mercifully, “You were right.”

That experience taught me to trust myself no matter what Western Medicine (or anyone else) had to say to me.  Yet, it has not led me to overcome completely my immediate impulse to shut up and put up rather than stick up for myself in the examining room, on the ultrasound table, in the OR.  I’ve gotten better, but I still find myself asking later – at a less opportune time, usually preceded by much unnecessary agonizing over what-ifs – questions that would best have been asked when I was in the same room with the people prodding and poking me.

I thought IVF would be different.  And to some extent it was.  But in many respects, it was the same.  I suspect that part of this is a function of attending a clinic with several REs, so you rarely are being seen by your own doctor.  And when you are seeing your own doctor, your feet are up in stirrups and doc is only there for the instant it takes to complete whatever procedure is being done to you that day.  Or you’re high as a kite or under anaesthetic.  Not exactly conducive to candid communication.

For me, another part is fear.  Sometimes I am afraid of the answer – and this I blame in part on Dr. Jerk.  Sometimes silence is better than what might replace it.  We are so vulnerable in these moments on our infertility journeys.  The last thing we need is an insensitive comment from the likes of Dr. Claw or Dr. Jerk.

I am a firm believer in the embrace of our vulnerability as a means of empowerment and liberation.  But IVF (like Western Medicine generally, which to me it neatly epitomizes) got the better of me.  I have a laundry list of questions for my RE.  But I won’t be asking them anytime soon.  I need some time to feel more myself and less burst-into-tears-over-every-second-song-and-every-human-interest-story-on-the-radio emotional.  (True story – I have found myself fighting tears in the car listening to the radio lately.)  I also need to get through the next few days as I sit out the limbo of our two-week wait.

I will get there.  I will ask my questions.  Or I won’t.  Depending on how this all turns out, some of them may be moot.

In the meantime, I wish to thank you for all of your warm and kind wishes, your prayers and your hope.  I am so grateful.  See what I mean?  Tears are filling my eyes and spilling down my cheeks as I type out my gratitude to you.

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