Interlude: Words Matter
What if the stigma around infertility, and women's health in general, is in the word infertility itself? Where did it come from and how do we try to change the narrative when what's written in medical textbooks could be biased against the patients themselves? Dr. Robin E Jensen talks about her book "Infertility: Tracing the History of a Transformative Term," and how we went from barren to sterile to infertile, and maybe where we go next.
Dr. Jensen's book "Infertility: Tracing the History of a Tranformative Term" is available wherever books are sold.
(transcripts are for purposes of searching and are approximations at best)
It was around this time last year that i started taking the concept of infertility awareness to heart and started this podcast to help shine a light on the struggles that i'd seen my patients endure once i put it out in the world, i began to find there are a lot of others doing the same and what has been a silent struggle for so long is becoming less so and that's a wonderful thing thing the last full week of april is national infertility awareness week and over the last year it appears the world is becoming a lot more aware of those who've tried to conceive a child but find they cannot the media is alive with story he's gabrielle union discussed how she's almost lost count of the eight or nine miscarriages she had documentaries like one more shot and vegas baby are giving you a direct view into couples lives as they struggle the show friends from college on netflix had an entire episode showing the ardor and craziness of ivf injections even the upright citizens brigade introduced a taste of improv comedy into their struggle and it's marvelous this year's theme for national infertility awareness week has flipped the script and it couldn't come at a better time never before have women's voice has been so amplified to bring about change in how they're treated and perceived but how do we flip the script ? There's more and more evidence that women's complaints especially of physical and mental symptoms are more often ignored and given less weight than that of men and too often the advice that they're given can be downright patronizing just look at serena williams who had to beg her doctors to pay attention during childbirth that she thought something was wrong all because they thought she was just quote unquote confused thinking about all of this made me wonder if there's something inherent and how we talk about medicine particularly infertility that could be the problem i'm not just talking about our conversations but the actual individual words we use this made me question where even the word we use now infertility comes from and that led me to today's interview in march i had the pleasure of being on a panel with dr robin jensen who in two thousand sixteen wrote a book called infertility tracing the history of a transformative term and i think it's exactly this history that could hold one of the keys to how we flipped the script on infertility way this's waiting for babies i'm steven mavros today's interview is about the words we use around infertility throughout history and who better to talk to than the one who wrote the book on it i'm robin jensen i'm a professor at the university of utah and the department of communication and i study reproductive health and rhetorical history largely so how we talk about different subjects over different periods of time and then how that affects how we talk about the thing in the present day dr jensen specialty is in rhetoric which is basically how we use words to be persuasive so how does one get into the study of rhetoric you ask yeah so when i was in college i was on a speech team where we did basically right speeches and you compete with other people who give speeches on dh i just loved it and in that process i started to learn about rhetoric and what that largely means is how people persuade each other how they use language tio our various symbols to convince other people tio you know agree with them or bone in their direction or that kind of thing on dh that really appealed to me i was just really interested in and how you speak to people in ways that are persuasive or not and how that came then affect people lived experience on dso after college i went to grad school and found out that you know, a lot of people study this and i could you know i could explore how people are talking and why or why not that's effective and that's really what i've what i've been doing ever since and what you're you to the reproductive world. I know you did a lot of work and sexual education. And, like, what ? What got you into that, that particular subset of it. So i'm interested in women and women's history. And it turns out that a lot of with history has to do with reproductive health. And so, you know, i started looking at how people talk about, you know, sex, education and how we can encourage people and let people know about. You know their bodies and how and what resources they have available to them and how they learned about what is possible and what's not and in that process infertility became really, really central because it's not something that we talk about in sex education and it seems like something that we should be discussing in terms of, you know, helping people understand what fertility is when it might happen, how it happens, andi kind of what they can expect from ah broader fertility timeline, it seems to me that that's something that we should be teaching young people so that they just have a sense of what that is, so we don't get to the point where people are all of a sudden trying to have a family and they've never thought about fertility before and they've never thought about, you know, the potential hardships there or the choices they have to make in terms of win and how and what and and that affects women's lives in a very real way and men's lives as well in terms of their professional outlook in terms of you know, the possibilities they have to them in terms of education in terms of making choices about what their life will look like in infertility tracing the history of a transformative term, dr jensen tried to go back to see how our society talked about the inability to conceive so i went as far back as i could, and i only speak english. Sadly, so i couldn't ah look into some of the really far back sources. But, you know, around in the sixteen hundreds, people people were using the term barron on. There was a real understanding that women, and it was always about women. And often that is the case in our historical narrative, that women are connected to the earth and their natural and their bodies are soil on dh. There was a real organic metaphor of, you know, being fertile, which is ultimately where that fertility metaphor comes. Four comes from that. But to talk about women as barron is really connecting them. Tio nature in a way that it doesn't connect men a lot of times that aligned, actually, with a religious outlook that if you were, quote unquote there and you were somehow and not in god's favor in that god would grant the blessing of children and allow youto be fruitful and multiply. If you did the things that we're in line with godliness or morality and so women who found themselves it barren we're often their main recourse was tio pray or teo you know try and make themselves right with god towards the mid eighteen hundreds medicalization began to happen births went from being at home with the midwife to being in the hospital with a physician suddenly baroness became a medical problem that could be fixed with interventions like surgery and people like j marion sin early gynecologist started operating on women and trying tio appease or fix their reproductive problems via operation and that really became a medicalized issue on dh then you start seeing baroness being called sterility and surreality was treated in a hospital with something that the doctor could and it was always he could go in and sort of open a woman up and try to fix what was in there closer up and then she would magically have you know the powers of of bearing children and it didn't always work out that way. In fact, the the record shows that this the rates of success for j marion simms is interventions were really low but people started talking about sterility as an issue that could could be treated in the in the hospital by a surgeon and that that was the main way that that people could overcome that kind of issue even though it wasn't actually all that true i guess the interesting change there is that to an extent suddenly it's no longer the woman's fault and it has now become something that can be fixed and it's something physiological yeah, that's really interesting because aa lot of times we think about medicalization as something that takes, you know, takes agency away from individuals, so we're not we're not able if this is the model there's, nothing really that we on our own khun dio toe alter our health outcome, but if we go into a doctor or surgeon, they will take care of it, and so we don't have as much agency, but the sort of the great thing about that is that women were being blamed as much for their lack of children because the understanding wass you know, whatever it is, you can go in and get it fixed and you can't really do anything about it it's the doctor, the surgeon who can intervene. And so there was ah bit of relief i would imagine and that it wasn't like, well, you can appeal to god and eventually hope that you'll be in his good graces and be blessed with the child. This is more of the story of yeah, you just this stuff happens and we're going to try and take care of it by cutting you open and seeing what's wrong in there now, just in case you thought this medicalization was a good turn for the field of sterility, as it was known at the time, we should put this surgical intervention in context for women. This may have taken away some of the blame placed upon them, but absolutely gave them no agency to be anything other than guinea pigs to a mad scientist. Also, this was the mid eighteen hundreds, so instead of doing testing on animals or on cadavers, sims did it on people who had no choice. He operated on slave women primarily to begin to try to figure out and experiments essentially, with his surgeries, he didn't use anesthesia. Of course he didn't have consent. Um, and these were just brutal surgeries. Sometimes he would operate up to seventy times on an individual woman, which is just the worst possible. I mean, i can't even fathom what that experience was like, so he first did these experiments on slave women, and then he moved into the public sector and charged inordinate amount of money in many cases for women bite women who could pay on, and he used anesthesia on them that had pretty low success rates because that he was essentially doing is trying to see pretty dark times indeed, with the turn of the twentieth century. Thankfully, things start to change, and science discovers chemistry and the concept of hormones pressed innately the nineteen thirties. There is what might be called a rise of of of reproductive endocrinology, where you have doctors who are realizing and and surgeons and various kinds of scientific clinicians are realizing that something that comes to be called hormones is involved in the reproductive process. And they really start studying that process and realizing that both men and women have hormonal. Ah, you know, hormonal compositions that must be correct in order for, you know, conception, pregnancy, childbirth to take place. And so you have women and men coming in to try to be tested and treated, often with hormones, usually not with the surgical interventions that had been so prevalent with j marion simms. And then we're finally included in a really substantive way where they were going in and sort of getting their hormones tested. And, you know, it wasn't a mass migration. Some of them were unwilling to do this, but but they were considered sort of the equation of of sterility ah and what was coming to be known as fertility and infertility in a way that they haven't in the past so so women were not necessarily seen during this era as the onus of conception in the way that they had been in the past do you know off the top here ahead when like infertility or fertility was first coined or when that phrase was first used yes so there is ah doctor named his last name is duncan and he first used the term in the late eighteen hundreds but it really didn't get taken up until the early nineteen hundreds and even then it was fertility that was used and not infertility you start seeing the inverse of fertility mohr toward the second half of the twentieth century so it really didn't it's a relatively new term that people are talking about infertility until that time they're talking largely about sterility and not today we we think of stability often is just referring to men but stability was really across the board and then we started making the switch now while this veranda understanding chemistry is going on another concept is a rising about women specifically i feel like it's best summarized by this quote that dr jensen includes in her book and it's written by journalist halina huntington smith in nineteen thirty four for parents magazine it says quote, there is an unmistakable connexion between the stress of modern living and sterility the women of today who tries to expand her energies to include a great many other things besides home and children is under a nervous strain unknown to her grandmother and quote which struck me about this is how it's still echoes to today so that's that's in there and if that goes back to the early nineteen hundreds and probably late eighteen hundreds and it's called the narrative of energy conservation and it it emerges from theories of evolution and social darwinism and from herbert spencer and various other philosophers who argued that humans are fixed energy systems meaning that we don't acquire energy we just have a set amount and we can use it in whatever way we see fit for women this was conceptualized as ok you have a set amount of energy you can use it either for your brain or for your reproductive organs and so if you are using your brain too much that's fine but the output will be that you you will not be able to have children or you will have other reproductive problems because you used your energy you misused your energy and ultimately that theory has was proven false relatively early on but the thing that is it's important to note is that the narrative of energy conservation even persists today wherein people will say you know you're working too hard maybe you need toe give up your professional life for your education and and then you know your body will figure out what it needs to dio whereas you know you never see that kind of narrative for men if they're having fertility problems there hardship you know, say well, you know the answer is you've got to quit your job or you're getting too much education there's really an understanding that women have a fixed set of energy and that if they are not if they're having reproductive problems because they've just used their brain too much and all the energy has gone there so here's a theory from the nineteen thirties about energy conservation and a few question whether it's still persist today in two thousand eighteen where we have a hyper scientific fertility field where we have this amazing ability to do things like pre implantation genetic testing i give you this one example bed rest anyone who's been through ivf knows all about that rest the majority of fertility clinics in the united states on their discharge papers for women who've been through an embryo transfer fresh or frozen is the recommendation of around twenty four hours of bed rest sometimes it's a cz muchas seventy two hours often it's combined with the instruction to not lift anything over ten pounds for years i took this as established science. Then i started doing research. I looked for the studies that broke out women lifting three pounds versus ten pounds versus twenty pounds and who had more success women who just went toe you know go on with their normal lives after transfer as opposed to those that had their feet up on the couch for a week you know what i found nothing i couldn't find a single study that in any way shows that bed rest or minimal lifting changes someone's outcomes of success during ivf there was even one study those small that showed the opposite i happily challenge anyone out there docks nurses anyone who's in the reproductive endocrinology field please prove me wrong and i will get down off this soapbox because then i'll have a lot more respect for how this field treats its patients send me a study or even a strong siri's of case studies showing that this instruction we give women is in any way based in science otherwise it sounds to me like every reproductive endocrinologist this country is still following the law of energy conservation from the turn of the century that seemingly only exists in women not men i'm pretty sure we've disproven and to me sounds like the most patronizing and intensely demeaning crap i've ever heard okay now that my first ranches over let's get back to the mid twentieth century and the post war era around this time we saw the rise of psycho analysis and it definitely hit the fertility world aa lot of us have heard about freud. Not many of us have heard about helene deutsch, who was a freudian students and became a cycle analyst in the united states. She moved from europe, and she really took on the female side of psycho analysis. You see, freud thought that the male psyche was the norm, while deutsche thought that women have their own unique psychology. But then she also concluded in line with freud that women really needed to align with, uh, feminine pursuits and ideas, and you know, if they didn't do that, they were, they were psychologically abnormal and then would be blocked in their ability to do their female specific quote unquote duties. What her advice usually wass, is that they would do things like again not pursue higher education, stay out of the workplace, be a feminine as possible. One of those other ideas was to adopt, because if you adopt a child, your maternal instincts and processes would be unblocked, and then you would i have a child of your own, you could see the traveled on your own because those you had become more feminine and more quote unquote normal. And that is where the adoption this comes from, its still in this today, that if you adopt the child you are, then we're likely to conceive a child of your own on dh. There have been numerous scientific studies on this to show that, in fact, the race, they're exactly the same. But you had a lot of adoptions happening around this time in the mid twentieth century, with the idea that that would then ignites a woman's own normal psychology and then allow her to consume well. As far as i can tell, this is a myth that was disproved in studies before i was even born. There was even one in nineteen seventy nine that almost showed the opposite, that people who adopted were less likely to get pregnant. But this was deemed insignificant, a difference at the time. Yet i can't tell you how many parties and meetings i've been to, where someone will find out i work in the infertility world, old and say to me, i mean, it must all be stress, right ? Look at all those people who get pregnant after they adopt. You can't see it, but even just talking about it. I'm rolling my eyes, but wait. In case you thought that's, where the patronizing ends, it gets even worse. One. Of the ideas wass if you were ah, person who had had miscarriages, or even if you are a person who had morning sickness or nausea in early or at any point in the pregnancy, the argument was that your body was rejecting the pregnancy, that you had too much of a masculine outlook on life, and so your body was trying to reject motherhood, and so if you had miscarriages, it was called an abortion neuroses, because your body was ejecting the fetus and rejecting it, and it was it was your psychology that was doing that. And if you were having, um, you know, if you were having vomiting or you are having any kind of nausea and pregnancy, that was also the idea was that it was it was because you didn't really want a baby, that you're psychology was maybe we're telling people he wanted a baby, maybe even i thought you wanted a baby, but your body was rejecting it on dh. So if you could just imagine the kind of blame and and the horrible feelings that you would have if that's what you're your physician or the people around you were telling it when you were having those experiences it's just it's a really sort of a horror to think about that history. Now, as we get closer to modern times in the nineteen eighties, came the concept of the biological clock. It was exacerbated by a french study published in the new england journal of medicine. That said, fertility declined sharply after age thirty. Now, even though this study was quickly refuted suddenly, timing of every part of a woman's life became yet one more thing. She had to control for, manage and succeed at the discourse of fertility really become this kind of dissed discipline discourse of timing yourself and by yourself always the woman who is doing that timing because it's her body on dh it's the male body too, but sort of the argument is, you know, he's not going through a cycle, he just has to do his role at the appropriate time on dh so the woman becomes inherently, you know, just really focused in on timing all these processes correctly and then doing it within the life cycle at the right time on dh the downside of that, i think for a lot of people is that it's very difficult to live a full life while you are trying tio time these bodily processes just so, and you are going to monitor your body on a day to day basis to make this happen, and if it doesn't happen it, you know, there's always the implication that you're doing it wrong, that you're not strict enough for or your body is wrong or, you know, and that's a really, really difficult place toe exist, and people exist in that place for long periods of time and and it's really devastating on a number of levels, so we're giving them agency, but at the same time by giving them that agency, we give them a point of failure, right ? And there's been the argument that this creates something called it a fertility mandates where you can never stop once you get into sort of the technological interventions stage of fertility until you conceive and birds that biological child it's really there's a sort of a compelling, uh, pores that derive you to keep going no matter the cost to your body, to your financial situation, to your partner, to your relationship, to all of these other things, beyond the point where it's healthy for you to do that. So now here we are in two thousand eighteen one of the most poignant examples of how rhetoric affects us and in the world of infertility women especially isn't how medical conditions are named in textbooks and taught to medical students. One of my favorites is the i think you brought this up in your book, too. Is this this juxtaposition between what happens when essentially the a flap that comes from the reproductive organ fails ? And in a woman it's called an incompetent service cervix and in a man it's like retrograde ejaculation like you you for you don't talk about the incompetence likes think to reflect that's happening ? No, no yeah, and those are those air, discursive rhetorical choices that have been made and that we keep reiterating i mean, i can't believe we still use these terms incompetent cervix, but that is the medical term on dh there are a bunch of other sort of similar terms that persist in the medical terminology, and that then we use on a day to day basis and it's really hard, not tio sort of garner a sense of the moral judgment that seems to be happening for something that people have absolutely no control over. I want to give two more examples of this. If a woman is no longer producing eggs when they should be, we call it premature ovarian failure. Note the word failure known men we call it a zoo spur mia, which basically just means an absence of sperm. We don't say testicular failure or vas deferens failure, we don't say ejaculate torrey failure now, for some reason, sperm can appropriately flow through the cervical mucus into the uterus or found to not survive within the cervical fluid. The medical term for that is either hostile cervical mucus or the uterus itself is hostile. We don't call this berm weak or dainty or crappy swimmers, we attribute the foul to the woman and call them hostile are you sensing a pattern here ? Okay, back to dr jensen on the men's side of things i don't think what we want to do is then give similar terms to male male processes that we can for sure stop using these really odd medical terms that place blame on women's body is there as part of what you do in your profession do you feel like there's a an easy path forward to start that change ? There are some people who are doing advocacy work to try and alter and view more aware of that language i don't know that there's an easy path to change if there was i would march up to the medical school on my campus and say ok we're not using this anymore stop but i don't you know that's not how it works in some way we have to kill infiltrate the's technical fears of discourse and i think what half and what i mean by that is a lot of times it is medical education that's really the spot where people are learning these terms without sort of critical analysis and then perpetuating them in the exam rooms and then from there they get circulated on a day to day basis by people who encounter them who are not doctor than clinician so if we could create sort of medical training medical education that is thoughtful and reflective of these terms i think things would change and that's probably where i would identify the most impact in terms of moving forward with that specific issue yeah, one of the interesting terms that you use throughout the book. And i was curious if this was your kind of pushing us into the next word or phrase that we use was involuntary childlessness. Is that something you specifically are pushing is, like the next word for infertility ? Or, or was it just a good way of phrasing ? What you were going for you ? Know, i think others have introduced that term as an alternative in a lot of ways. It's more descriptive in it. And it gets that the situation better than infertility. But it's a mouthful. So i don't know, you know, it's hard to say, involuntary childlessness, people, i in a lot of ways i think that communicates that, you know, people are childless, but they don't want to be without getting into, you know, the morality issues or some of the blame. That's placed thea the label infertility. I don't know that it's necessarily better or worse, but it's certainly an alternative. Andi, i think the more alternative we have, the better certainly bearing this is awful. I think that term could we can all agree that's not a great term. Stability is, has a lot of sort of negative associations and infertility. You know, i think some people maybe are fine with that term, but it's another option. And i think if we can keep coming up with ideas and ways to describe people's experiences, we provide more options for them and more ways of imagining themselves in the process of putting their families and their lives together in ways that make them feel, you know, not at fault, which is really important. For the last few months, there's been a tremendous amount of research showing how bad maternal outcomes are for women of color. When you look back at the experiences of serena williams after her birth, it's no surprise that the maternal mortality rate of black women is significantly higher than white women. Now, i'm not just talking about ten or twenty percent black women who have complications during pregnancy or delivery, or two to three times more likely to die than white women who suffer from the same conditions two to three times its also no wonder that the concept and rhetoric of infertility around minorities would also be different, and possibly be one of the causes of this disparity. You know the history of infertility is really different for for instance minority women african there can women in particular because you know, one of the arguments has long been that african american women and and women minority women are closer to nature and therefore don't have any problem bearing children in fact are hyper fertile and when they had when they go into childbirth that hurt them less because they're closer to nature and it's easier for them to do these kind of biological processes none of this is true of course and in fact our highest rates of infertility among populations today are among minority women what that means for women minority women in a really lived uh embodied way is that it's really difficult for them to think of getting any kind of intervention having to do with fertility because they don't think of themselves as the person who would be infertile and their families don't think of that either on and then doctors and providers don't take women who are minority seriously on dh for low income women course there are you know they don't have access to the health care that a lot of little upper middle to upper class people have and and of course there's also the history of african american women and i talked about j marion sins and he was you know, doing his fertility experiments essentially on women who had no choice in the matter and so there's also a distrust of the medical establishment, and and rightly so, in that, you know, there have been situations where minority women have been mistreated and the other side of things. We also have a history in this country of, of sterilizing african american women without their knowledge, particularly low income african american women. So so that's, a really important story that needs to be black out and told in the future there's. One more word that i want to come back to that dr jensen keyed in on during our conversation that i think is crucial to put in context. That's the word choice. If you ask any behavioral economist about the concept or architecture of choice, choices are never made in a bubble. They're not objective. They're not infinite. Decisions are made, and often those decisions air skewed based on how choices air presented to us. This comes right back to infertility and, of course, specifically for women into what choices they really have about living their lives and planning a family and the interesting thing about the choice terminology is that you know in what respect is that also blame oriented like i would choose to have a child at a certain point in my life but we all know that that's not necessarily how things happen right pregnancies happen or don't happen maybe you need a life partner maybe you don't maybe you have a professional opportunity at a certain point and that set things up and are those choices well in some respects but in others they're structurally sort of set out for you and so to say that women chose i mean one of the narratives that here all the time is like well that professional woman waited too long she's going to wait too long and then that's just you know it's her fault she should have worked at finding a husband and rick and you know, creating a family early on whereas you just don't get that narrative with men if there was a recent study that came out that i was reading it talked about how women who have babies between the ages of late twenties and mid thirties it's it's impossible for that is all statistically there they end up always making less money than their husbands for the rest of their lives there's like a sort of a child bearing tax in that way they just don't make up the wages that they lost during that time, whereas women who have children earlier than that or later, will eventually make up the deficit that they have with their partners, or with their male counter point. But what you see there is that there are really clear economic hardship that women are having to navigate on dh, those air directly connected to win, and how and why they have children. And so, you know, what we see there is that this narrative that it's a woman's fault is really doesn't attend to these kind of structural differences that she's trying to navigate there's, not a clear way through there's, not a right way to do it. Are there ? Are there any other things that prompted the book and that where you want to go from here afterwards ? Now, now that you've been kind of talking about this, yeah, yeah. So, uh, in the future, i'm planning. A number of different research projects, one of which is, you know, interviewing current fertility patients and talking to them about the discourse is that they've encountered it sounds like you have a lot of experience on that front, so maybe we'll have to talk more on dh. I'm also doing a historical project on some of the, uh, the women who have been central to shaping the field of fertility studies, so i mentioned a little bit in the book sofia, click men on dh, helly, deutsche and a few others, but i really didn't get into as much the sort of fights and the ways in which they had to insert themselves on dh, how they've been were able to change the discourse is of fertility, for better or for worse, but often for better to try and offer mohr agency for women and the inclusion of men and different ways of thinking about about reproductive health. And so one of my arguments is that, you know, we talk about things in ways that are productive because people have tried to break up the discourses that are harmful in the past on dh so what did they do ? How did they try to do that ? And and what can we garner from that as ? We move forward a big thank you to dr robin jensen for sharing her amazing research and passion for this field we have a link to her book infertility tracing the history of a transformative term on our website if you want to read more there's a ton of interesting stories and theories in the book that we didn't get a chance to touch on here as we come to the end of infertility awareness week i encourage everyone who's listening to get involved in this conversation if the words and medical terms we use are part of where stigma lies it's time we fight to change them now aside from this episode i put a few thoughts about how we can flip the script on our website at waiting for babies dot com another big day in the fertility world is coming up soon and that's advocacy day where people who've struggled with infertility and work in the fertility field come together and converge on washington dc to have their voices heard and promote legislation to reduce stigma and increase access to care for anyone wanting to bring a child into their lives if you'd like to attend and get involved we have a link on our website we're going to resolve dot org's i'll be there and would love to meet listeners and storm the halls of congress together with you till then thanks for listening i'm steven mavros see you next time