The medical profession’s tone deafness surrounding infertility and involuntary childlessness
On the Thursday before this past Sunday, the day that shall not be named here in the US, it finally came.
Considering the fact I’m living as, among other things, a childless not by choice survivor of infertility, I had had a relatively trigger free week. I went food shopping twice (a newly regained ability since coming down with post infection dysautonomia almost a year and a half ago) and no one wished me happy mother’s day. I ran into a neighbor while getting my groceries out of the car and she didn’t mention the looming national holiday. Making up for my winter of hibernation, I went out twice – once grabbing lunch with a friend and another having dinner with my husband and two friends of ours. Nary a peep. And aside from the usual commercial bombardment, which seemed to be making me only mildly grumpy and was not spiking my sarcasm meter to the degree it usually does, I was actually starting to feel like this is my world too once again.
Now, I want to be clear, it’s not like I was just skipping through my week. Four years out of trying to conceive and four years into the grieving and healing process, there are still many times when I wish I could emblazon myself with a “fragile, please handle with care” stamp. The week leading into mother’s day is of course one of them. Sensing my wounds and vulnerabilities undulating just beneath my now quasi functional surface, I attempted to make the necessary adjustments.
I moved my food shopping back a day, noting that I’d benefit from being away from humans of all kinds in the days prior to Sunday. I had to remind myself that while selecting nice and indulgent food in the effort to honor my childlessness and healing on mother’s day has sneakingly become my normal, it’s still a thing. And a sensitive one at that. In other words, mine was not going to be any old mindless “let’s pick up some burgers and hot dogs for the family barbecue” kind food shopping venture. No sir.
I marveled at the fact that I had somehow arrived at the point of healing where self care actually feels relevant, where it actually feels like more than throwing a raisin into a manhole. The first few years it was all about survival of all kinds.
And I loosened up my to do list, affording myself the space to breathe, feel, observe and just be. Tuning into my mother’s day sonar, I started to toss out inquiries – “How are you? Where are you now? How is this for you this year?”, knowing that a seemingly calm wavelength could be agitated at any given moment. And as many of you know, it’s not a question of if, but rather when.
Lying on my stomach and melting with the table, I had just made the shift into that tragically open and receptive space so that I could be adjusted when the chiropractor oh so casually and cheerfully asked me what I was doing for mother’s day.
Questions such as these are still stabbing, though not with any where near the intensity they used to be. And I do have to say, having a dis-regulated autonomic nervous system does not help my physiological response any.
But most of all, it caught me totally off guard being that I had carefully and painstakingly filled out the office paper work just a few weeks prior. One of the questions had been “How many children do you have?” or something along those lines. I put much contemplation into my answer, as assessing how you’re going to configure any life altering traumatic loss into a few words is in and of itself an enormous intellectual exercise.
I settled on “0, CNBC (childless not by choice)”. I reasoned that if I had just put a zero in answer to the number of children, it would be assumed that I hadn’t wanted them, and as we all know that opens up multiple cans of hurtful assumptions and misconceptions. I figured the CNBC part would serve as my ‘fragile, handle with care” stamp.
On a following page I included “multiple fertility treatments”, or maybe it was “multiple failed fertility treatments” under my list of surgical procedures. “That’ll paint a clear enough picture without going overboard”, I had thought, momentarily forgetting that the fertile/parenting world is not exactly known for its adeptness in dot connecting.
Back on the table, I took a deep breath as one part of me reeled from shock and hurt while the other jumped at the chance to educate. “Well, that’s a hard thing as my husband and I wanted children, tried really hard and couldn’t have them.” Iterating a societally unspoken, unacknowledged experience really is the ultimate act of thinking on your feet. Her response was appropriate enough – she gave me a soft pat on the the back and apologized, saying she thought I had kids. I let her know that I was going to hunker down and that I had set up some nice food for myself. I told her that being four years out of treatments, the day though always hard was not quite as tough as it used to be and I had started using it as a chance to gauge my healing. I expressed gratitude for having a mother who doesn’t expect anything from me on that day and who is correct in only wanting me to take care of myself. I let her know that not everyone’s family is so acknowledging and compassionate and stated that it really is a very hard day for so many people. She remained quiet, which is unquestionably much better than saying the wrong thing.
On my return home I noted my exhaustion and a rattled sort of feeling, knowing that I would have felt worse had I not said anything. I’d have felt much less worse had the subject come up via a question not so reeking in presumption, such as “Do have anything going on this weekend?”
I went outside and perused my gardens, acquired a bit of settledness and went inside, heated up some soup and was thankfully able to get some rest before going on to my next thing. Instead of the children I wanted to nurture and care for, I’m now saddled with the job of nurturing and caring for myself in a world that just doesn’t seem to want to see and hear people like me.
About a year and a half or two prior, I was lying on yet another table getting my yearly breast sonogram. Having already made my way through the heart tearing “# of pregnancies” and “# of live births” section on the imaging center’s intake form, I figured I was good to go. “Do you have kids?” my technician ingeniously asked me in the midst of a lull in her monologue which consisted of mindless chatter about her child. I gulped in a large breath and proceeded to answer.
She had a curiosity about her which I found to be workable, and noting that fact that she at least did not shy away from my reality, I tolerated her efforts to imbibe my circumstances as the sonogram tool bobbed over and over my knotty, cystic breasts.
“Maybe you should get a dog, you know, like for a distraction”, she said. I explained to her that people who go through what I go through have to field such intense emotions that we’re typically not in need of distractions – we’ve really become that good at sitting in and navigating our way through the uncomfortable. She as it turned out had one child, by choice, and although it was quite painful for me at the time it served as a sort of useful thread in our exchange, given the judgements and idiotic queries (albeit exceedingly less traumatizing, disenfranchising and grief strickening ones!) people with one child typically have to field.
“Well, you just never know who you might be talking to” she mused at the end of our session. Clearly I had made her think. But I was already drained, and would have been whether I had spoken my truth or not.
Fast forward a year plus later and I was lying on my back ready to get my CT scan. I was nauseous and the room was spinning. About a month into suffering from a disregulated autonomic nervous system that was at the time undiagnosed, I was dragging myself around to get my ordered tests done. I was panicky, lightheaded as hell and had rapidly lost a bunch of weight. I could typically stand for fifteen minutes at the most.
At the imaging center I had again made my way through the mother of all questions “# of live births”. I had tolerated the deluge – yes, count, THREE of them – of “is there any chance you could be pregnant?” questions. My direct “none at all” answer did not seem to deter the technician from asking again and again. Why it’s necessary to ask an almost 46 year old who answered zero to number of live births on her intake form that question three fucking times is beyond me. And there I was, lying on my back (which turned out to be a position my body couldn’t tolerate until at least month ten of my illness). “Do you have kids?” the technician chirped mindlessly. WTF?? I gave her a firm NO and continued my struggle in trying to just exist. Given my current physical state I was going to have to leave her and her bewildered deer in the headlights face dangling.
One might argue we remain quiet in all of these situations, but since people like to think the experience of non-parenthood doesn’t exist, being quiet or brief within the subject of motherhood only invites further painful probing. And just try saying no to the “Do you have kids?” question. Answering anything but yes is practically an Olympic sport. Furthermore, I’ve always felt that I owe my silence to no one. My silence is not a necessary response to someone else’s uninformed and thoughtless behavior. Whenever it’s feasible, I operate under the “you ask, I answer” code. Pretty much everything else works that way in life, there’s no reason why people who get to be parents should get a pass from this basic order of things.
And the greater point here is not what we choose to do or not do, it’s that we should not be put into these conversational positions during medical appointments in the first place.
It is my hope that I can heal – both physically and otherwise – to the point where I can do something more productive and to the point with my grievances than simply venting them in a blog post. But for now, this is going to have to suffice. So here it is:
DEAR MEDICAL PROFESSIONALS OF ALL KINDS,
When someone indicates in their paperwork that they do not have children, it’s relevant.
When someone sites zero live births, it is relevant. The chances they are childless not by choice are much higher than the minuscule possibilities that they adopted or had a child via surrogate.
20% of the world’s population over the age of 45 doesn’t parent. It has been found that as much as 90% of the world’s child free population is child free not by choice. This means their childlessness happened to them. That they have been dealt a life altering loss which they are grieving or have grieved deeply and more likely than not will have to create, are creating, or have had to create a life much outside of the conventional norm.
In addition, many have suffered through grueling years of medical procedures to try to conceive, thus carrying extra layers of trauma. And we all have to deal with staggering levels of social alienation.
Asking about children and parenthood to people who have indicated their lives turned out otherwise is like bringing up the topic of marriage to someone who has the grave misfortune of having to check the “widowed” box. I sincerely hope this isn’t a part of your patient practices.
We have the right to medical treatment that is free from triggers.
We have the right to medical treatment that doesn’t require us to answer for that which we lost.
And should what we lost come up in the conversation, we have the right to an acknowledging, non-judgmental ear.
It is your job to be educated, however, it is not the patient’s job to educate you mid procedure.
Asking someone who has indicated they don’t have children what they are doing on mother’s day is like asking a patient with three limbs how their high-wire trapeze act is coming along.
We deserve to have the painful questions included on your intake forms that we have slogged through answering to be read and taken into proper consideration.
Please, read the flipping chart!