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!
infertilityhonesty 
Hi Sarah, how I have echoed your thoughts about ‘please, read the flipping chart!’ over the years. I wonder why we need bother filling in a chart because it seems it’s never properly flipping read, is it?
I’ve had numerous medical procedures and you’d think with forms filled in saying ‘no children’ we wouldn’t get asked this same question again and again like groundhog day. I find it infuriating and have been deeply distressed at some of the offhand comments of medics – when having my knee replacement in my early 40’s ‘oh that’s lucky’ lucky? LUCKY? What, I’ve had multiple babyloss and that’s somehow lucky as I’m having major knee surgery because my knee is shot with osteoarthritits at such a young age and I’ve got no older kids to help out at home? Arghhhh!
Brilliant blog, thank you for sharing and I sincerely hope your health is improving xxx
Thanks for the good wishes, Bamberlamb. Things with my health do seem to be going in the right direction. The lucky comment should be banned from existence, I’m sorry you had to absorb it in the midst of what was already no doubt a trying experience. This mindless myth that every life experience involving children is automatically harder also needs to go. Thankfully, I have only been told this once during my nervous system disorder, and it was by someone who had wanted children but it didn’t work out for her to have them! I of course corrected her, while silently nothing that even some members of our tribe have been brainwashed into thinking their plights are somehow less important. Maddening, isn’t it?
One of my biggest pet peeves is that most media professionals don’t read the patient charts. They argue they don’t have time. My argument is that if you don’t have time, don’t torture people with having them fill out the information only to then surprise them with not having read it.
I’ve actually started calling medical professionals out on this practice. When they ask questions that make it clear they haven’t read my chart, I ask “why didn’t you read my chart?” To me it shows they don’t care about their patients and need to be called out on it.
I’m so sorry your chiropractor did this to you. Shame on her.
I’m going to follow your lead Cristy and make attempts to address it right then and there. Good advice. It’s happened to me enough times where it’s reasonable that I expect it to happen. In which case maybe I’ll be more ready next time. One can hope:-)
Really well written and heartfelt. And you are SO right!
Although not the same thing, but similar in the triggers and emotions, the widowed community deals with these medical
issues on all forms that ask about marital status. Sometimes “widowed” isnt even an option to check off. Its either married, single, or divorced. As if people never die. If it IS there, it sucks having to check off that box. And when I do, and then STILL get asked to relive the day he died by medical professionals who should know better than to ask such things, it sucks. Or, they DONT READ THE FLIPPIN CHART and ask me AGAIN inside the doctors office, if Im married. If I have kids. etc etc. I already answwred all that on the freakin application thingy in the waiting room. Why must I answer again, using my shaky voice? 7 years later, my voice no longer shakes and I dont burst into tears each time I hav eto say “Im widowed” – but it feels like Im being stabbed every single time, and its unnecessary.
I thought I was the only one with the shakey voice!! Totally agree with the unnecessary part – so much of this could be avoided, and it’s relevant since the constant reliving of things amid those who don’t get it is a likely factor in many health problems. It doesn’t level my nervous system any, I can tell you that! It stinks to have a box to check, and to not have a box and to check as though your loss doesn’t exist. So sorry you have to go through that.
Thanks again for the “throwing a raisin in a manhole” metaphor – I truly appreciate being able to rip it off from you:-)
These are very good points. Especially from the medical community, it’s not like infertility is a new or unknown concept.
That’s a great point – since it’s a medical condition we’d expect the medical profession to not be so tone deaf in its presence.
Brilliantly said as always! We just survived good ‘ol Mother’s day, now about 5 years since we quit TTC…it is getting easier for us too BUT still, it is my LEAST fave calendar day. I have not yet had the pleasure of being treated like this by any medical staff, though I am sure it is likely only a matter of time! I expect my frankness has become such by now, that I will probably simply say “do you read the bloody chart/question answers?” Then go on to explain why it matters if they proceed to be mindless or defensive!? I have shared this on our SM…I am reaching out to our fellow CNBC via infertility tribe more & more…may others not suffer in isolation etc as badly as we have! Thank you Sarah. xxx
Congrats on surviving, Deri. It is no small feat, even being a few years out of TTC. I thought (and still think!) it’s my least fave calendar day too, but this past year for some reason the winter holidays and my birthday of all things (that’s usually my more benign one) were rougher. Ahhh, grief. Go figure. Thanks for sharing this and I echo your sentiment of wanting to leave this experience a more humane one for those who come behind us.
Yes, if only they would. I once had a guy ask me three times in a row, “Do you have children?”
“No,” I said the first time a little annoyed.
One minute later, he asks again, “Do you have children?”
I gape at him, shake my head, and with more annoyance answer, “No.”
Two minutes later, “Do you have children?”
“No!” I ground out. “I don’t. How many times will you ask?”
“Oh,” he blinked in surprise as if hearing me for the first time. Without missing a beat, “Why not? I have three. Don’t you want kids?”
My dad said it was amazing I didn’t give him the finger and storm off.
Some people…
WTF???? So glad to hear your Dad was on your side:-). If no is an Olympic sport in this circumstance, I think you won the gold. I notice when it comes to child talk people have this odd way of repeating themselves. I was once in one of our restaurants talking to a customer when out of nowhere, unrelated to anything she beamed, “I’m a grandmother now”. Since my husband and I were in the midst of coming to grips with the loss of that, we gave her a disinterested “mmmmmm”. And it’s not like this crew needs encouragement to continue (“please, fertiles, USE your VOICES” yeah, like as if). So she repeats herself “I’m a grandmother now.” Thankfully she stopped, but I was ready to “mmmmm” some more if I had to…..
Wow…just wow!!! It’s amazing to me that this ever happens, but it does. My favorite is when they ask the followup to “Do you have children?” – the ever-so-invasive “Did you want them?”, as was recently asked of me by a medical professional. I love the stat you included that as much as 90% of the child free population are child free not by choice. Why can’t the rest of the world catch up with this information and STOP asking!!! If someone checks off “single” on the form, do they get asked “Oh did you want to get married?”. Though equally just as inappropriate, I doubt that happens. Why is it that my childlessness is such a point of fascination to people – like a circus act or something!
It’s way past time the world caught up, isn’t it??? Your raising of the rude as hell and totally unnecessary follow up “did you want them?” has me thinking. Unquestionably inappropriate in a medical setting. I think in both medical and personal settings the question can take on an accusatory, judgmental, fault finding tone – like as in if you didn’t want them there’s something wrong with you (which there of course isn’t), or if you did and you didn’t acquire children than you must have failed greatly on some level.
Now if somebody asked in a personal setting (not a medical one!) at a relevant time in the conversation because they sincerely wanted to know, and were ready to respond appropriately to either answer – encouragement and interest perhaps in those who didn’t want them, and compassion, empathy and interest in those who did perhaps – then the question might fall into a more appropriate zone. Dare to dream.
Amen, amen, amen. That being said, even though they knew my history, I was still “required” to take a pregnancy test by Planned Parenthood’s doctor if I wanted them to perform an already-PTSD-inducing endometrial biopsy 2 weeks ago to see what was wrong with my 8 straight weeks of bleeding. Oh and the biopsy and ultrasounds came out fine so of course guess what they suggested? Going on birth control. Sometimes they read the chart and are still insensitive assholes.
Oh and “get a dog” advice? Fuck that shit.
Oh yeah! Right there with ya!
Oh, so sorry. That sounds so reinjurious. And like it was very insensitively handled. I abhor pregnancy tests – they are evil.
I’m going to take Cristy’s lead from now on, and read the chart.
I have a great example. I was in hospital for my too-risky-to-operate second ectopic pregnancy, and was sent for a CT scan to check it wasn’t a metastasised pregnancy-related (trophoblastic) cancer. The OB-GYN ward that arranged my appointment could have easily noted why they wanted the scan. But no, the radiologist still asked me, “is there any chance you could be pregnant?” Read the flipping chart!
Like you, I find it so much easier to respond to interested questions, rather than to judgement or those who turn away. And open questions are so easy, as you suggested with the “doing anything tomorrow?” question. Instead of “do you have kids?” why don’t people just ask, “what’s been keeping you busy lately?”
edit – first sentence – “ask them why they didn’t read the chart.” Doh!
I figured:-)
Goodness Mali, that’s maddening! The medical professionals could have shown much more consideration for your loss and trauma – even if they had acknowledged your situation and said “I know this is painful, but I’m sorry, by law I have to ask you”…….
There’s definitely more room with people who are sincerely trying to wrap their brains around it, no matter how many wrong turns they might make, they are making an effort to listen and absorb. Most people aren’t doing that, and there’s really no where to go with these people.
So much yes!
Gosh, I hate this. Read. The. Goddamn. Chart.
Oddly enough, my chiropractor did this same exact thing. He promptly listened to more than he ever wanted to know about infertility and endometriosis.
It’s my dream that I would have been a fly on the wall for that. Oh well, maybe next time…..
I watched Die Hard on mothers day – perfect m-day movie of course, and naturally I thought of you:-)
i don’t know WHY we keep getting asked this question (especially since, as you pointed out, they made us supply this information in the first place). “Please, read the flipping chart!” Amen!
We have a lot more educating to do – groan. Keep trekking, everybody!
Seriously. Read the damn chart!!!
I’ve seen the same gynecologist for many years, so she knows about my whole experience. She knows not to ask me stupid stuff. But she’s been in practice for a long time so she often has a student training with her when I visit her, and I try to teach them. I figure it’s the only 5-10 minutes they are going to hear from a real-life infertile woman so I try to cram in as much info as possible. I try to explain how it feels in the different stages of TTC/infertility and then I try to tell them what NOT to say to their patients.
I couldn’t do this while I was going through it all. Heck, I couldn’t even stop crying during my appointments while I was in the acute stage of infertility (which we all know can last many years). But now that I can talk about it without crying nonstop (even though it does affect me for the rest of the day), I try to do my best. I have had a couple students say they learned more from me in 10 minutes than from any of their professors on the topic, and I tell them I’m not surprised because no one talks about it. The people going through it can’t talk about it and the people who haven’t been through it don’t know what they’re talking about.
I share all that to relate to what you’ve written. And I want to say a huge Thank You for those moments any of us have the strength (though we may be sacrificing our energetic reserves for the rest of the day) to lecture/educate medical professionals on this topic. I wish the letter you wrote was required reading for all healthcare professionals.
How awesome that you educate your doctor’s trainees and that she seems well versed with everything!! It is a huge service which I, in all honesty, often forget because all I can think about sometimes is how tired it makes me, and what an unreciprocating experience it feels like.
I think reaching out and informing health care professionals in some organized, pre planned way is not a bad idea for a future project. Hmmm…..
I needed am xray on something and filled out a form asking if I could be pregnant. I wrote no and handed my chart in. Techinican comes and asks me if I think I’m pregnant, I respond I’m pretty sure I’m not. She proceeds to educate me about the dangers of having an xray while pregnant. I said again, not pregnant. She put some type of shield over my belly just in case I was wrong.
That happened 15ish years ago…it still makes me angry.
I work with people who don’t always have filters or think before they answer…and they always seem immensely shocked and confused when they question my number of children. They can’t live with this discomfort of not knowing or understanding and usually offer suggestions.
Sorry for the “suggestions” you’re privy to Kathy. There’s nothing worse than “advice” from those who are so clueless they don’t even know they have no clue.
As for your x-ray story, I’m sorry you had to go through that. I don’t see why one, or perhaps two “any chance you could be pregnant” questions doesn’t cover it. At some point, some of the onus has to be on the woman as opposed to all of it on the technician and medical facility. And the x-ray process should take care of and consider everyone, not just those who can conceive.
What a fantastic post. Just last week I went to my doctor to tell him I was having unusual periods–flooding, clots. He has all my info about my past fertility struggles and pregnancy losses. What does he ask me? If I could be pregnant. I said no. He said, are you sure? I said yes. He asked what birth control we use and I said condoms (I’ve been medically advised not to try to get pregnant any more). He said, well those aren’t 100%. OH MY GOD.
Of course this is the same doctor who is surprised every time he recommends I take Advil as a painkiller and I remind him I’m not allowed to take ibuprofen. Just once I’d like him to pretend to read my chart!
Mali, I occasionally work with medical students (as a layperson) and I always spend as much time as I can educating them about what it is like to have fertility struggles…and just what it’s like to be a vulnerable patient in general. I am glad you are able to do so as well–if it helps them improve their interactions with even one patient it’s well worth it.
Seriously?? Human beings are so mindless, especially when it comes to conversation around the notion of getting pregnant. Doctors are supposed to be above that. I’ve had medical professionals tell me that pregnancy tests could be wrong (in response to “is there a chance you could be pregnant?”, I responded, “no, I took a test a couple days ago”) when in fact, false negatives are highly unusual. False positives, maybe. It sucks to know more than the people who are supposed to be taking care of you, that’s for sure. And while this does’t quite relate to your experience, it got me thinking – the idea of someone with fertility issues not knowing they are pregnant is ludicrous! We know more about our bodies than anyone.
Glad to hear that you jump in to educate as well. It takes so much energy, but it may well be we’re the only way people are going to learn.
Thank you for sharing!
You’re welcome Jenny, thanks for reading.
As a student nurse and someone who suffers infertility, I just wanted to say thank you for writing this. X
Wishing you well with your nursing career and honoring the courage it must take to pursue it while in the throws of IF.
this is why so many people hate going to the dentist or doctor. they always have this i know better attitude and they hardly ever know more about your body than you do.