On Medical Misogyny with Dr Elinor Cleghorn

https://www.youtube.com/watch?v=mfR-HhT86JM

In this episode of the Pedantic Zebra Book Club, we’re joined by writer and cultural historian Dr Elinor Cleghorn to discuss her acclaimed book Unwell Women: A Journey Through Medicine and Myth in a Man-Made World.

Together we explore the long history of medical misogyny, the cultural myths that shaped women’s healthcare, and the enduring legacy of dismissal, disbelief, and diagnostic inequality. From hysteria and psychosomatic labels to chronic illness and modern medical gaslighting, this conversation examines how historical narratives continue to shape patient experiences today.

We also discuss the emotional and political impact of writing Unwell Women and why reclaiming these histories matters now more than ever.

If you’re interested in medical humanities, feminist history, chronic illness, disability, healthcare justice, or the politics of medicine, this episode is for you.

For accessibility the chapter timestamps are included below and a transcript.

Chapters

00:00 Introduction & Elinor Cleghorn’s Story

02:17 Lupus, Misdiagnosis & Medical Dismissal

08:40 The History of “Hysteria” in Medicine

15:30 Women’s Pain & Diagnostic Bias

21:45 Autoimmune Disease & Gender

30:55 Why Chronic Illness Is So Often Disbelieved

34:42 Medicine’s Problem With Complexity

35:31 Falling Through the Cracks of Specialisms

37:52 Medical Education & “It’s Anxiety”

39:46 What Medical Misogyny Actually Means

41:49 Endometriosis & Systemic Failure

43:01 The NHS, Chronic Illness & Structural Problems

44:38 Why Doctors Need Time to Sit With Uncertainty

46:04 ME/CFS, Incline Village & “Yuppie Flu”

49:54 Psychologising ME & “Myalgic Nervosa”

51:05 Long Covid, ME & Chronic Illness Stigma

53:15 Why Medicine Must Change for Chronic Disease

55:14 Exploitation, Blame & “Fairy Tale Diagnoses”

56:18 Reimagining Healthcare Around Patients

58:10 Elinor’s New Book: A Woman’s Work

58:29 Reclaiming the Radical History of Mothering

Transcript

Hello and welcome to the Pedantic Zebra Book Club. Today we’re discussing Unwell Women by Dr. Elinor Cleghorn, a groundbreaking exploration of how medicine has been historically misunderstood, dismissed and mistreated women’s bodies, pain and illness. From ancient ideas of hysteria to contemporary experiences of medical gaslighting, Unwell Women traces the long cultural history behind diagnostic inequality and

systemic neglect in healthcare. The book has become an essential text for conversations around gender, medicine, chronic illness and patient advocacy. And we’re delighted to be joined by author and cultural historian Elinor Cleghorn to talk about the research behind the book, the historical patterns that still shape healthcare today and why these stories

continue to resonate so powerfully with readers and patients alike. So without further ado, let’s welcome Elinor in. Hello!

Hi! Thank you so much for having me Rupert and for that lovely introduction and thank you everyone for joining us.

I think it was lovely just about after the time my tongue started working but thank you for putting it that way. So it’s a genuine pleasure to have you join us. I’ve loved reading your book I’ve loved learning from your book as I was saying

Rupert

Hello and welcome to the Pedantic Zebra Book Club. Today we’re discussing Unwell Women by Dr. Elinor Cleghorn, a groundbreaking exploration of how medicine has been historically misunderstood, dismissed and mistreated women’s bodies, pain and illness. From ancient ideas of hysteria to contemporary experiences of medical gaslighting, Unwell Women traces the long cultural history behind diagnostic inequality and

systemic neglect in healthcare. The book has become an essential text for conversations around gender, medicine, chronic illness and patient advocacy. And we’re delighted to be joined by author and cultural historian Elinor Cleghorn to talk about the research behind the book, the historical patterns that still shape healthcare today and why these stories

continue to resonate so powerfully with readers and patients alike. So without further ado, let’s welcome Elinor in. Hello!

Elinor

Hi! Thank you so much for having me Rupert and for that lovely introduction and thank you everyone for joining us.

Rupert

I think it was lovely just about after the time my tongue started working but thank you for putting it that way. So it’s a genuine pleasure to have you join us. I’ve loved reading your book I’ve loved learning from your book as I was saying

before it’s not the easiest read at every turn simply because the weight of women’s suffering in the book is harsh at times but it’s written with thoroughness but a lightness and a concision that I really valued as a reader and I think many many others have

as well so it’s a testament and a textbook I think at the same time with a little bit of memoir at the end and I appreciated all of that so for those who haven’t yet got themselves hold of a copy here it is and that’s what we’re going to be discussing today so

Let’s start with some of the questions, we’ll get a little bit into the detail of these things, but let’s start simple. What motivated you to write Unwell Women?

Elinor

So there are a couple of main factors that motivated me to write Unwell Women and chief among them was my own eventual diagnosis with lupus, an autoimmune disease that affects predominantly women. And I was diagnosed with this disease in 2009, just after my second son was born following a complicated pregnancy that was caused

by what was going on in my body that was causing the lupus. but for about seven or eight years before I was pregnant and gave birth to my son I experienced what I later understood to be the characteristic symptoms of lupus which included fatigue and pain, sun sensitivity, migraines, digestive issues,

mental health issues and every time I went to my GP either in my sort of home village or at university in London I was dismissed with some version of you’re experiencing all this because you’re a young woman because you’re hormonal because you’re anxious because you’re stressed because you’re hysterical in other words so the the diagnosis was was

Difficult, of course, it’s a whole new identity, a whole new narrative, a whole new set of parameters to negotiate. But it was also a vindication and a relief because it made me understand that I was absolutely right to pursue answers about what was happening in my body and that this hadn’t all been in my head.

and that the dismissal that I experienced from health care professionals was not my fault, that this was something to do with the system that I was in, with the gatekeeping that happened when I was first getting ill. So my own experience was really the kind of catalyst for writing on wild women.

I am a doctor of history and philosophy and not a medical doctor. And as a historian, my first impulse is to look back to understand where we are in the present so I was looking back through my own history my own body’s history to try and understand

where I was in the present with my diagnosis but in order to also understand what happened to me I started looking back through medicine’s history for patients like me so I started looking at medical archives things like the Wellcome Trust papers published online to find young women who had lupus and to sort of read

their case studies and what I found there so there was one in particular a young woman named Grace who died in 1908 in the what was then called the London hospital and the cause of her death was a very similar heart condition to one that I had and

when I read over her case notes her symptoms felt so similar to mine her experiences felt so similar to mine and looking back at her history she had also been told that she was a hysterical young woman by the doctors in the very early 20th century So it struck me that medical science, biomedicine,

had progressed exponentially in this century, virtually a century since I’ve been diagnosed. But what hadn’t really moved, the needle had not moved when it came to the treatment of women who are unwell without immediate explanation, nor to the attitudes towards women’s unexplained pain. So these were the two main factors. And as I researched, the more I researched,

the more I thought about this subject, the more I understood that this just wasn’t an issue that was happening around safe water immunity. It was deeply embedded and ingrained in in the majority of illnesses, health conditions that women experience in their lives. So to really get to the roots of why this was happening,

why in the 21st century women were still having to wait for so many years for conclusive diagnoses, where they were still being told that their pain was all in their heads. What I wanted to do was unravel this issue and get back to the roots and try and figure out historically where it all began.

Rupert

It certainly feels at the end of the book like the whole strand has been there unraveled on the floor but the lyrics change but the song remains the same is how it felt to me. I mean which historical myths about women’s bodies would you say that modern medicine hasn’t yet fully shaken off?

Elinor

I think that the principal myth that modern medicine hasn’t shaken off is that the primary condition of existing in a female body is to be a body in pain. That pain is women’s lot in life. It’s what we are born to experience. It’s what our life cycle is marked out for through menstruation, reproduction, menopause, etc.

And I really think that when we, I mean, there are many myths, I think, from history that we are grappling with and that are real obstacles to to our care. But I think this basic idea that’s very biblical, you know, we have this story of Eve in the Christian tradition,

that Eve messes everything up because she wants to know things, so God curses all women to suffer in reproduction, to experience sorrow and physical pain. This is such a deeply embedded idea and because it’s cultural. It’s not just medical. It’s not just a medical notion. It’s a deeply cultural idea that women experience pain. That’s just part.

That’s a natural thing. So I think especially around gynecological conditions, around conditions that affect women specifically related to reproductive biology, this myth that we exist to experience pain, therefore our pain is not immediately a medical issue. It’s a condition of our gender, it’s not a condition of our needing support from a medical system.

Rupert

and that’s one I would say yeah yeah yeah sorry I mean I was just thinking really that in your in your book as well you give a real sense of the sort of the cruel affinity of the menstrual cycle and the way that it is used as validation for that

you know the the routineness of um pain or perceived pain or imagined worse pain I think say that it is and the idea that it can be cured through reproductive function um you know and so there’s a sort of horrible um ironic sort of melding of those

myths with you know biological fact to concretize in the male mind yeah completely

Elinor

you know the justification of these myths throughout history in as you say the male mind because medicine for centuries was dominated by male minds by male practitioners. It wasn’t a practice that women were admitted to for many centuries. So we’ve inherited thousands of years of male mindedness around what women’s bodies,

what it’s like to live inside a woman’s body and the justification for certain beliefs is drawn from biological theories which kind of just layers on the cruelty doesn’t it it’s like the cure for pain is more pain the cure for menstrual pain is to go

through the pain of birth pregnancy you know it’s like you keep layering on cementing on sort of pain layers of pain causing condition yeah and and so often

Rupert

the the pain suffered in the aftermath of um difficult or traumatic birth yeah

Elinor

Absolutely, the emotional pain as well as the physical pain.

Rupert

Yeah, absolutely. So in the book you show how, so for those who haven’t yet read the book and are I’m sure teetering on the brink, could you give us a couple of examples from history of how medicine has interpreted women’s symptoms through morality or psychology?

Elinor

Absolutely. So the book begins at the sort of start of what we might call the Western medical tradition. So the tradition that our mainstream medical practice is embedded in, which I sort of situate in classical Greece with the writings of the legendary physician Hippocrates or the physicians associated with the legendary Hippocrates.

who we I’m sure all heard of because his name is given to the principles of ethical medicine the Hippocratic Oath so the Hippocratic writers were the first medical writers in our history to really sort of divorce illness from supernatural forces from religion from curses from that kind of thing and to really think about disease

and illnesses organic processes in the body so they wanted to figure out why people get sick what can be done to help them so so far so good right and they had lots of very ethical ideas about how you treat patients and they should cause first you know

harm but these physicians are deeply embedded in a social system that’s very misogynistic and very deeply patriarchal and within that system there are very specific ideas about men’s bodies and women’s bodies and what men do in society and what women do women are primarily seen as reproductive vessels reproductive beings whose purpose

is to bear and raise the children of men so the ideas of these physicians these early physicians were rooted in this kind of social beliefs because these physicians were not able to look through a diagnostic imaging technique and see what was actually happening inside the The classical physicians didn’t perform autopsies either.

So what they were doing was looking at the symptoms. So say a woman was experiencing very painful menstruation when she was young. Instead of understanding that something might be going on in her body, they understood that she should be performing her reproductive duty,

Rupert

for example.

Elinor

Similarly with young women who had symptoms of emotional distress, what we might now identify with a variety of mental health conditions, those kind of symptoms were also linked to the necessity within a woman’s body to get working with reproducing, to get pregnant, to have marital sex, to have babies, to give birth to them, to nurse them,

These were seen as the health giving events because it was what a woman’s body was seen as being for. So this foundational ideas about women’s bodies being primarily reproductive, that reproduction is health giving, that reproduction gives a female body its equilibrium, were woven into medical thinking as the centuries wore on, even as new knowledge was produced.

so the primary idea that women are reproductive really stayed and I think this is very much shaped how women have been seen within our western medical tradition so they’ve held so if you think about their illnesses the women the unwell women being seen as a woman who is not somehow doing her womanhood properly right she’s either

not yet reproducing or she’s or she’s begun menopause and she’s not able to do it anymore you know there’s a sort of unwomanness in an unwell woman so the idea throughout medicine that we get pregnant and that makes us well really really sticks and as we move through the

centuries more ideas are kind of pegged onto this basic principle so we start doctors start having a lot to say about women’s it’s necessary for women to be domestic or quiet or to not read novels or to not ride horses you know there are a

variety of crackers theories that I talk about in the book but the principal idea of a well woman is a reproductive domesticated woman who toes the social line

Rupert

and there’s there’s a big there’s a big overlap isn’t there um you point out in the book between the things that women are told not to do and the things that either

Elinor

are fun or make you smarter yeah basically anything to do with deciding what you want to do with your body and your life um anything that might yeah enhance your intellect or give you a sort of broader view of the world anything that might take you out of the

domestic space or make you yearn for a life beyond marriage and motherhood are very often throughout history pathologized as the cause of diseases and illnesses in women principally among them hysteria yeah yeah yeah and the kind of the

Rupert

philosopher bit in me calls that agency. You said that philosophy is part of your background as well. The parallels with liberalism and the idea of the rights of the individual is a very strong one isn’t it that you have those liberal enlightenment philosophers centering the individual at the heart of ethics but that didn’t

include really women or slaves because the very notion of the individual was of a wealthy man and it’s very similar with that Hippocratic tradition that you’re Yes

Elinor

so similar and it’s so interesting that you make that point because I’m really fascinated in the idea of women being exempted from citizenship or the idea of being a citizen or being a fully sort of realised human by virtue of these sort of biological traits and this kind

of biological essentialism that the male mind has deemed to be the reason why women cannot fully occupy citizenship or cannot occupy it on an equal footing to men and medicine you know doctors had a huge influential role I think in determining what a woman was in terms of her personhood

you know we don’t now imagine that you know the I don’t know like the lead psychologist from the royal free would sort of write an op-ed in the guardian about why it’s a very bad idea for women to work outside the home like imagine imagine such a thing happening well then you have

19th century medicine you know and around when key debates are happening around what people what the significance of people and their relationship to society really is doctors really did have quite an influential role to play in this because they were they were the they were speaking from science so the things they said they deemed to be a

refutable fact so I’m thinking for example about doctors in the 19th century who had an awful lot to say about menstruation and they thought that menstruation exempted women from further study from a university level study and that by virtue of menstruating that women didn’t have the resources of energy necessary for them to expend on studying

And so they went to great lengths to kind of promote sort of what we would now call an anti-feminist ideology, which was to say, look, we can’t be expanding women’s rights because it will literally lead to the downfall of society. You let women into colleges and they will their ovaries will blow up. You know,

they can’t they don’t have enough energy in the system to sustain the mind and to stay in the uterus. so it was often couched in these almost apocalyptic terms that women’s the denial of women’s full personhood linked to this their susceptibility to frailty to

physical delicacy to and illness was a reason to exempt them from the world around

Rupert

them yeah the for your own good vibes were very strong throughout the book. Is there a historical figure or a particular patient story that you couldn’t stop thinking about after writing the book?

Elinor

Yeah and there are many, I mean Grace who I mentioned earlier was my initial companion in writing the book, Grace who died of lupus. I didn’t actually tell her story in the book in the end because I don’t know whether it felt too personal or whether it just didn’t have a place

that made sense but I’ve talked about her in most interviews I’ve done for the book because she was so important to formulating my thinking around the need for this book and I wanted to honour that I mean she was a girl from a working family she was of no

she only appears in the historical record because she was unwell and she died and some doctors wanted to write a case study of her and publish it and this to me was really important because it made me think okay when we’re working with the history

of real people who might only emerge into the historical record because of their suffering there are certain decisions there’s certain care right you have to do a duty of care towards these subjects and make sure I think that their stories are being told in order to hopefully advance some change or to resonate with readers rather than

because they’re salacious or they’re gratuitous or they’re going to have a kind of you know shock factor a lot of the stories I tell in the book do have a degree of shock factor but those decisions I think are really important when the kind of figuring out where you stand ethically,

what your care is to your historical subjects is very important to me. There was another woman who was described in a very early 20th century neurological clinic paper from the States and she was the subject of a lecture given by this neurologist because she had this incredibly kind of storied history

of nervous and hysteric illness and she had been through some truly horrible procedures some surgical interventions into her anatomy that were completely needless like to kind of cure her nymphomania was one thing that was named to cure her extreme nervousness her hysteria and what really struck me about this case study was that she this woman was allowed

to leave the kind of residential clinic facility asylum as they were called then and she took on work as a nurse and then she talked well the case study because she’s not voicing this the case study says that her symptoms as they were described vanished

and it really struck me that there was this young woman who was diagnosed with illnesses that don’t exist hysteria isn’t real nymphoma it isn’t real these are terms created by doctors in the past to explain away certain behaviors or certain behaviors in women that are not concordant with socialized societal ideals

or certain symptoms in women, illness symptoms that are not immediately explainable. So she wasn’t unwell, but what she was was trapped within this sort of diagnostic cruelty because she did not conform to the ideal of a domesticated young woman in the late 19th, early 20th century. And once she took on this meaningful work,

as it was described in the case notes, that was what she needed. She needed a life outside of what had been prescribed for her. And this story always struck me as a sort of perfect exemplar of medicine’s historic failings of women, and that’s to conflate the desire for life with illness dysfunction ailment so she really struck really

always really stayed with me and what’s so interesting is that her story was not being told by this particular neurologist because he thought it was so great that she was cured it was told because of all the treatments and all the diagnoses that

she’d been through it was a medical case so it’s like I have work with this woman look at all these things that she’s experienced aren’t I clever but in reality it’s a story of what happens when women who simply desired a life of their own were pathologised

Rupert

medicalised and pathologised yeah yeah for that for that very desire to express themselves and be free and just thinking about Thinking about that experience of women with doctors in particular, the burden of proof often seems to fall on patients and particularly women with poorly understood illnesses. Has medicine, do you think,

always demanded this kind of performance from women to demonstrate or to prove their sickness?

Elinor

Yes I think medicine has absolutely demanded this kind of performance from women but at the same time it has punished them for performing their illness it’s required women to exhibit a certain selection of illness behaviours and when those behaviours are exhibited then women have been pathologised and punished for them

Hysteria is the prime example of this because we read in the literature many descriptions of women who were diagnosed with hysteria of some form having disordered speech or episodes of nervous tremors, for example, or some very visible, very locatable symptoms that can be seen by the doctor.

But yet those symptoms are the exact same symptoms that then have women penalised

Rupert

as being attention seekers,

Elinor

as being not genuinely ill. So it’s really women have often been stuck in this kind of horrible circularity again. We kind of keep coming back to you where medicine is required of them something and then punish them for it. Yeah.

Rupert

it’s almost like what you’re describing is almost like a threshold where up to a certain level women can talk about symptoms and they can be dismissed as nothing and then past a certain threshold those same or an amplification of those symptoms becomes it becomes again the woman’s problem not for speaking up about what is seen

as trivial but for then exemplifying all that’s wrong with disordered women’s bodies so there’s a flip over from it’s your fault to now it’s your fault yes yeah and there’s no space in between where where where women’s experience of being ill can be examined on its own terms the

Elinor

legitimacy women have always had to perform a kind of choreo choreography of legitimacy somehow Like and I feel that now I feel that is something that is still asked of chronically unwell women, you know, so many chronically unwell women that I have either been in contact with since the book’s out or that I know personally,

we have a kind of understanding of how you navigate that doctor’s office or that appointment with your GP or that consultant appointment. You know, we know what is being asked of us in that room. We learn how to access the care we need we learn what will have us deemed difficult and what will

have us deemed you know pleasant to deal with and often this is for our own often this is a kind of form of advocacy or a form of you know protection a way that we learn to navigate these systems that we’re in that are often broken off and don’t serve us

But it’s definitely something I always think about this. So in the 17th century, hysteria was first described. So hysteria has kind of been with us in some form or another since ancient Greece. But hysteria as this kind of nebulous, nervous disease that principally affected women was first described in 17th century.

And the person who dedicated the most kind of calamities to this disease was Thomas Sydenham. who was the so-called English Hippocrates Thomas Sydenham was one of the most important figures in the history of chronic illness naming illness and describing it and he talks about hysteria and he essentially throws every conceivable symptom

you can think of into this kind of bandwagon it’s like okay this is a hysteric woman she might come to you with pain nervousness insomnia I mean you name it it’s on his list one of the symptoms of hysteria that Sydenham names is a woman talking about her own pain so simply by virtue of talking

about pain confessing pain describing pain by Sydenham’s definition she could be termed hysteric so it’s written in is this is I think what I mean when I say that these issues we’re facing today are so ingrained is that they are knitted into the writings of the

so-called kind of fathers of chronic illness understanding yeah and it’s just I’m

Rupert

sure there’s a there’s a fallacy term for it but it’s a circuitous logic isn’t it you start with the problem and then bundle the experience of every aspect of possible aspect of the experience of being a woman under the diagnosis since yeah it’s self-perpetuating yeah absolutely yeah so

I mean one of the striking things in the book you know chapter after chapter you know many end with a hero or often a very flawed hero of some sort who makes a change who makes a difference who offers the tantalizing prospect that things might get better

that women might be treated better, especially by the time we get to the modern age. But in what you write about the pill, about ME, autoimmunity, it shows that it’s far from the case. What makes some illnesses especially vulnerable to disbelief, do you think?

Elinor

I think that at least the way that our medical system is set up is that we don’t deal well with Something that isn’t immediately visible or can be encoded with data or can be visualised on a screen or in a scan. So if the majority of chronic illnesses, especially those that you just named,

begin with symptoms like fatigue and pain and maybe feelings of weakness or malaise, these are the symptoms that historically have been dismissed as either conditions of being a woman or of hysteric it’s all in your head symptoms so pain fatigue are subjective symptoms they affect us all so differently our experiences of them

is ours alone they’re universal experiences but the way we experience them is our own we can’t measure them we can’t visualize them what we can do is show how they affect our lives right we can prove how they affect our lives our relationships our day-to-day experiences but the actual what is actually happening in the body that

that relies on The health professional who’s looking after you to believe in what you are saying. And this is the issue when the first port call for legitimising, validating a person’s pain begins with a subjective description. women especially are set up to fail or to be disbelieved there are studies that

have been conducted that show that when women express pain they talk about being in pain and men do exactly the same thing that women are seen as being less deserving pain relief of analgesics of opiates and also less it’s less necessary for women to

be referred for more complex diagnostic testing you know this is a bias that is very very much with us that has been tested in a kind of outside of medical profession as well you know so-called lay people and so this is a bias again culturally that we hold and it sort of extends outside of medicine and

what we need I mean my fear the way I feel about it is that the more we understand that speaking up about one’s pain for a woman automatically kicks in a bias that her pain is not real you know the more we understand the roots of where these myths

have come from the more hopefully we can begin to think about a diagnostic encounter that does not need an immediate here it is on a scan this is you know doesn’t need the objective where the subjective can be taken as evidence absolutely and it’s no coincidence to me that

the major the illnesses that affect primarily women that will affect more women than men are the ones that tend to begin with the symptoms that are easy to dismiss out of hand

Rupert

One of the things that you highlight in the book is that women suffer more from chronic conditions, that many chronic conditions are multisystemic and diversely symptomatic. Is our medical system just structurally uncomfortable with uncertainty, diversity, complexity?

Elinor

We know I think anyone who has a chronic condition will appreciate how the different disciplines of medicine do not speak to one another. So one of the problems I have when I was pregnant and I had this complex pregnancy where my

my son who when I was pregnant had a very slow heart rate so I was being careful by fetal cardiology so I was tested for these antibodies that may have caused this heart condition tick I have them but it wasn’t the fetal cardiologist job to then

get me a rheumatologist refer me for care think about what medication I might need or talk to me about how what had been discovered would affect my body her concern was making sure that we could take the steps to hopefully right this idiosyncrasy

in my unborn son’s heart so I fell between the cracks and I think this happens to so many I know this is the experience of so many of us who suffer with chronic conditions is that a rheumatologist might be appropriate for some of what we’re going through but we need and we also might be seeing

a gastroenterologist we might be seeing a surgical specialist but often these disciplines do not speak to each other we should have in my opinion like a multi-factor or multi-systemic department in which those of us who have these complex conditions that cut across so many disciplines can go but we so often have

to navigate the system that is very much about classification about limiting down what is happening in order to treat what is happening and

Rupert

that’s not how chronic illnesses work yeah and yeah they are they require holistic understanding and engagement but what you’re talking about is the very dissection of the body while it’s alive where it’s carved up between the specialisms one is looking at your heart one’s looking at your womb and they’re not in conversation

and you become the vessel yeah you do

Elinor

you do you become kind of parceled out like passed out across and often you know I’m sure again anyone who is living with chronic illness knows the frustration of having like being recalled for multiple tests across your different various doctors you see like you you know I have I have eye tests for one department I have others

for because the medication I take can affect my retina so you know and then the work and the labor that we go through to kind of deal with all of that is also debilitating in and of itself you know just navigating the everyday kind of labor of having a complex condition because the system is not set

up to support us so we have to kind of patch it together ourselves and become your

Rupert

own researchers and doctors in its own right but yes absolutely I mean what is it about medical education do you think that leads to so many women being dismissed because of anxiety or other psychosocial

Elinor

explanations I remember doing a talk just when the book came out online for an American kind of cardiovascular teaching facility within a major hospital and there was a their sort of head registrar was an older man doctor who before we went online for the discussion told me that

in the 70s when he was doing his training that he was told that certain symptoms you just she’s hysterical to justice so it was absolutely written into medical education and so these symptoms included like a feeling of that something’s in your throat which

is called like globus hystericus I think this kind of feeling of like a blockage in your throat there were other symptoms as well like various kind of pain again come back to the two our two favourites our two bedfellows pain and fatigue so I mean that’s relatively recent right that doctors are being actively told to

dismiss out of hand women with certain symptoms like she’s just making a fuss I do think in the in the conversations I’ve had with much younger doctors I feel like gender equality diagnostic equality is so much more part of the kind of conscious understanding of what it means to be a health professional now

but I do think that there is just not enough I mean for starters wouldn’t it be great if we could have like a bit of teaching about what medical misogyny actually is. You know, it’s not just a buzzword. I’m sure everyone has been frustrated by hearing our former health secretary West

Streeting using medical misogyny to kind of get on the side of us when he was proposing this revised women’s health strategy that’s now vanished into thin air. But the idea that these terms are just sort of buzzy, they’re not. They mean, they’re meaningful and they signify

failure in care that has not been properly addressed I think by medical education

Rupert

it’s not so much of a male profession anymore yeah are women doctors better I don’t

Elinor

think it’s that’s necessarily the case and I do read this Often you know more women are entering medicine than ever before I think they’re now or at least they were maybe last year outnumbering men entering profession but and that’s brilliant you know what we need is more gender equity across the medical

profession of course we do I don’t think that that being a woman necessarily means that you will treat every woman really well or treat all patients really well I think what is really important is education for all healthcare professionals on the consequences of the medical dismissal of women and minority people of minoritized genders gender expensive

people education on what are the actual consequences of that because if we’re going to look at it as a purely economic issue just take our kind of emotions out of this you know the cost to the UK economy of not just like loss of labour loss of workforce but also of NHS spending right to

you say you’ve got a woman who presents with the early symptoms of what turns out to be endometriosis current diagnostic time is nine years and four months average yeah if we look at it in purely economic terms that’s an absolute like a squandrance of resources yes

so when you cut it when you cut the cake like that the only answer is this system has a problem with women because it doesn’t make sense otherwise the consequences are so clear you know we can becoming more and more conscious every day of the

burden to people’s everyday lives of being unwell and not having clear answers and not having reliable support those you know it’s not an unknown it’s not a shadowy and unknown thing this is well documented we’ve got figures we’ve got costs so when it all kind of shakes down we think okay

This system really does have a gender inequity problem. And I don’t believe for a second, I think that, you know, like most of us who live in this country, the concept of the NHS is a wonderful, truly wonderful thing. Socialised medicine is exceptionally important.

I don’t believe that the majority of people that work within the service are at all consciously trying to hurt or harm anyone I really don’t but they are also working within a broken system just like the patients are they are not given the resources that they need to care for their patients properly they’re not given the education

they need to care for their patients properly as the burden of chronic disease changes as more people are living longer people are becoming more unwell with more complex conditions we understand more about complex chronic conditions and how many of them overlap you know we and we are not the

system is not working for us but it’s also not working for the people who work in

Rupert

it is how I feel yeah yeah and I think like resource constraint breeds um simplicity or simplisticness of thinking yeah isn’t it so if you if you don’t have much time if you don’t have access to many options then you’re given a short

amount of time to make it to make a decision between two or three things yes um and it’s and ultimately under those um conditions um conditions it’s easier for a doctor to think well you know here’s your card here’s your diagnosis you know there you go be grateful because yeah to deal with

complexity means dwelling in not knowing it does it really does and that takes time yeah and it takes a certain loss of face of and authority whereby instead of feeling under pressure to give the answer straight away you have to okay okay well

I’m not sure tell me more and then well what we’ll do is over the next few weeks we’ll explore a few things and you know but so there’s those resource and structural constraints make that way of that very way of thinking less possible

Elinor

yeah if you’ve got eight minutes if you’ve got eight minutes or something whatever an average GP appointment is now You know, that’s assuming, you know, you as the patient can get in there, articulate everything clearly. That’s not how humans work. You know, we it’s oftentimes GP doctor’s appointments are traumatic. Oftentimes talking about how you feel,

talking about your pain, talking about your symptoms is not easy for everyone. Not everyone is this perfect dream advocate for their own medical needs. And you have this tiny little bit of time. in which you’re trying to articulate something that will get the ball rolling. And that’s incredibly hard for the people in the room.

Rupert

I mean, one group of people for whom it’s historically been extremely hard is people with ME. I mean, it’s ME Awareness Month at the moment, and you discuss ME in some detail in Unwell Women.

Elinor

Yes.

Rupert

Can you share with the audience some of the key issues that you raised in the book around ME in particular?

Elinor

So I talk about the sort of early documentations of what became ME CFS in the 80s and there was an outbreak of a mysterious fatigue and pain causing illness in this village in Lake Tahoe called Incline Village and many people the majority of them women of a kind of middle age younger middle-aged women were

becoming very unwell with this disease. And they went to doctors and the majority of them tested positive for Epstein-Barr virus. And so to kind of figure out an explanation for what was going on, this disease was sort of termed, tentatively termed chronic Epstein-Barr symptoms or chronic Epstein-Barr disease condition.

But because the residents of this particular village were well off, they were, you know, they were white, they were well off, they were of a certain, you know, economic bracket. I remember reading about one TV interview that talked about this woman who had the illness, but also her fresh good looks, you know, as if you can,

you know, the whole thing of surely you can’t look all right and be ill, right?

Rupert

Sort of heroin chic.

Elinor

Mm hmm. but the press and news agencies news outlets in the US quickly kind of grabbed on to this as a mass hysterical incident like these are a lot of women who are bored and have too much time on their hands and they’re kind of falling to this mass

historical episode then the following year what we now know to be an ME CFS took out half of the girls basketball team at Incline High School And then thousands more people across the US were presenting with similar symptoms. But because early on this disease had been categorised variously as Raggedy Ann syndrome, as the malaise of the 80s,

as yuppie flu, which I’m sure many of us have heard that term, it already had this sort of prejudice clinging to it. And then I talk also, so there’s you know the gendered issue as well that kind of speaks back to the the hysterical

woman the mass hysterical incident but then I talk in the book about a study that was done in the 70s in the UK by psychologists at London Middlesex Hospital and they decided to look back at cases at the hospital of a condition that at the time was termed benign myalgic encephalomyelitis

So they looked back at all the records that they had of this disease in this particular hospital since about the 1930s and they noticed, these psychologists, that the majority of the patients who identified as having these symptoms were nurses who’d been working on infectious disease wards, principally treating children with polio.

But because it was historical and they couldn’t necessarily identify a biological or viral entity, the psychologists conducting this study were like well it’s a massive it wasn’t clearly a massive hysterical event and they propose that it should be named myalgic nervosa which essentially means emotional pain it’s hysteria by any other name and

then in the early 90s I talk about how ME along with fibromyalgia was sort of lumped together in this thing called affective spectrum disorder which was a kind of form of somaticisation disorder as in your emotions are sort of projecting your emotional stress is conjuring symptoms in your body so when you have a disease that’s sort of

burdened by that amount of scepticism and sort of you know an awful kind of reputation invented by the media it’s incredibly difficult to kind of have that disease taken seriously and shared of it so it was really important to me as in as with other diseases that I talk about in the book

to just show what people who go through and live with ME are up against this is the foundation of knowledge is about skepticism it’s about dismissal it’s about you know women who have too much time to think about what’s going on in their bodies yeah and do you see some

Rupert

parallels between the treatment of women with ME and other chronic illnesses with the more recent response to long covid

Elinor

Yes absolutely I mean we think is recent studies sorry I’m just looking down at my notes again but I think the most recent figures suggest that women are about three times more likely to have and we know I think also that women over the age of 55 are more likely to have it too, am I right there,

in terms of most recent research and I think that similarly the inheritance of the reputation of something like ME that was created by you know the long covered is also a disease that is kind of grown up in the media spotlight you know something that has been shrouded and clouded from the beginnings of its

documentation with certain assumptions that are already in play about fatigue and pain causing conditions without an immediately identifiable set of biological markers because it isn’t enough again I think as I was saying earlier why can it not be enough to demonstrate the impact that this disease is

having on one’s life on one’s body on one’s capacity I think and I really do think that the history of the documentation of ME, also fibromyalgia 2, the amount of scepticism that fibromyalgia was shrouded in when it was named, when that was given a name, I think absolutely has contributed to what we’re seeing now.

But I think if anything, if what we’re seeing is an increase in chronic conditions without immediately, you know, without Something so determining that we can then create a drug for it that works for everyone.

Rupert

Yes.

Elinor

The nature of how we are unwell is changing. Right. So how we respond to that medically also needs to change. Yeah.

Rupert

I mean, there’s, you know, it seems to me that the system we operate under excels at dealing with traumatic injury and single source pathogens. or immediate live single source pathogens and it deals great with those emergency conditions that are singular or even if multiple then they’re there visible but

Elinor

that’s not what most people are ill with now no it isn’t it isn’t what most people are ill with now it’s not how most people become unwell for the long term either but it it’s It is great at that. The system is great at that.

But we need to rethink the system because it is failing so many unwell people.

Rupert

There’s a paradigm shift there, isn’t there? For me, it seems the maddening thing is there must be some wider environmental factors at play. with respect to chronic illness. But there seems to be a profound lack of curiosity.

Elinor

Yeah, that’s the perfect way to put it. It is a profound lack of curiosity. I think it mirrors the profound lack of curiosity that there’s been around really getting to grips with the causes of autoimmunity, for example. I think there were really strong parallels there too.

you know we’re told again and again that autoimmunity is combination of factors it might be environmental it might be post-viral you know but this what the issue with the speculation and the lack of curiosity and something that I feel really strongly about is it opens the floodgates up to exploitation of that unknowingness to you

know the kind of theories like One of the ones that I take, you know, deep, deep issue with is that autoimmunity is more prevalent in women because women, you know, bear the burden of looking after everyone and they can’t say, no, this is Gabor Mate for avoidance of doubt. You know, I take an enormous,

enormous issue with this kind of language, with this kind of exploitation, what I see as exploitation of people with poorly understood complex chronic conditions. I feel like it’s a deep a deeply problematic and troubling issue sort of fairy tale

Rupert

diagnosis isn’t it it’s yeah turning it into a story about yeah moral

Elinor

characteristics absolutely tragic in its outcomes yeah absolutely and I find that you know we everyone who lives with a chronic condition deserves a system that adjusts itself to respect the way that we become ill and are becoming ill as you say you know these this shift this paradigm shift I remember also doing

a similar tool when the book first came out and there was a brilliant French doctor and he spent a lot of time looking after different marginalized communities in France so he did a lot of work with trans people he did a lot of work with traveling communities with people who are often

very prejudiced against or cannot access medical services and somebody asked the question well what would you do to make the system better and he said burn it all down and rebuild it and rebuild it under the advisory of the people it’s failing so you want to understand how to care for chronically unwell people and I understand

this is very utopian to imagine that, you know, OK, we’re going to like refigure this system and we’re going to do it patient led. You know, we’re going to ask you what you need. Of course, that’s something to dream for. It’s something to dream for. My area is schools and agency and young people’s agency.

Rupert

And my wife is wearing with parallels that I’d love to explore. Imagining if we ask children what their understanding of problems in the world were and try to reimagine education and starting from there. there’s a profound parallel there that we know perhaps some other day but you’ve

given us I mean you’ve given us loads of detail and yet only really skim the surface of what’s in your fantastic book um and I would urge others to go and explore further but I would just like before before we wrap up to to ask you about the next one um and um

So can you tell us a little bit about reclaiming the radical history of mothering and maybe to segue us from that one fascination to the next?

Elinor

So my new book that came out in March is called A Woman’s Work Reclaiming the Radical History of Mothering and it follows a similar timeline as unwell women so it begins in the ancient world actually begins a bit earlier 9th century BCE and

continues more or less to the present and it’s a book that is really about how we can think about mothering as a radical practice and how women throughout history and mothers throughout history have operated under a male dominated system which has defined what mothering and childbearing is and how women have mothered in relation to that idea.

Rupert

So you’ve got the patriarchal

Elinor

motherhood and then I explore how how mothers have resisted that embraced it challenged it tried to overthrow it but I also look at how mothering has been this really crucial force for social and political change throughout history that mothers are not just these kind of silent denizens of the domestic sphere that

they’ve actually been instrumental to some of our most important historical moments so abolition of slavery the beginning of women’s rights civil rights movement feminism So yeah, it’s a political, social, cultural history of motherhood. And the reason that I chose mothering motherhood next is comes back to what we were talking about in the beginning of our discussion,

which is that in unwell women. women’s reproductive facility was so often touted as the reason why they could not be part of the world why women were vulnerable why they were ill why they were defective right all came down to their sort of maternal and reproductive status and

the book Unwell Women isn’t about mothering because it takes in pregnancy gynaecological health reproductive health but so I always was very curious to kind of pull out that history as well and unravel the roots of certain kind of contemporary beliefs about mothering and motherhood many of which are kind

of resurging with a vengeance now in right-wing politics so I was going to ask you

Rupert

about trad wife culture and the rise of all of those things

Elinor

yeah it’s been really it it’s really interesting one of the things that I unpack the roots of in the new book is this thing called pronatalism which is where the dominant culture shifts towards encouraging, coercing, forcing even people to adopt certain very gender defined roles and when that comes

to women it’s that your principal duty to yourself and to the state is to bear children and do what you were made to do and I think we’re seeing a real resurgence of this in US politics particularly but also I mean echoes of it in the in the statements of various reform politicians too

who are very actively platforming anti-women’s rights anti-abortion care sentiment anti-contraception sentiment you know very much the US does the thing the UK

Rupert

right-wing says hold my beer

Elinor

So I think in terms of what we’re seeing now, the right absolutely believes that revoking women’s rights, rolling back women’s rights, reducing women’s rights to decide what to do with their bodies and their lives is the route to increasing populations in the future. It isn’t, spoiler alert.

But for people who are very obsessed with the kind of false past or false narratives around the past that women are better off in the home, you know, the kind of ideas of a false past, the false nostalgia that fuels things like the trad wife phenomenon.

Rupert

and yeah so yes smaller world can be so pretty um but I mean there’s so much that’s fascinating what you say with the political connection there I mean the the link that is rarely and so um and so really well made around you know fears about lowering birth rates and about

about immigration and people refusing to make the link between the two and then what you get ultimately is a choice don’t you if you have low birth rates you have a choice you either try to create a world in which adults and potential parents

mostly women but men too feel that they can have more children because most when interviewed at around 40-45 say that they would have liked to have had more children

Elinor

Yes.

Rupert

But they don’t feel secure enough or capable enough or optimistic enough to bring as many as they would wish into the world. And that’s why we need more immigration. But you have a choice between how do we create the conditions where people feel free and happy to fulfil their wish to bring more children in the world?

Or how do we force the women to have them?

Elinor

And it’s far easier to revote women’s rights and to put women in a situation where really the only thing they have available to them for securing their own stability and safety is marriage and family making. It’s far easier to do that than it is to actually transform social conditions so

that what you have is a kind of mother-child centred family centred society The kind of right-wing actors who are behind all this pro-natalist stuff at the moment understand very well that bringing in the so-called liberal measures that we see in certain countries in Europe, for example, universally free childcare, really generous parental leave packages,

much more pay equality does not lead to increased birth rate. Why? in an equal society, people have choice. They have generally have more education, but the more research that’s being done at the moment, trying to identify, like, what is the issue? Why are people having fewer babies?

And I read a thing the other day that’s like, it’s a mystery. Yes, on the one hand, you know, the structure, the systems and structures are completely unstable if they exist at all. But there are also huge nuance here, right? The decision whether or not to have children is always going to be a combination of factors.

And what you rarely read about, I think, is this kind of existential fear that people have now about whether this world is one that they want to bring children into. and you know to bring it back to our conversation which is about the kind of

medical system and illness you know when we have a country in which we have this you know maternity services recruitment crisis in which people who have trained and worked incredibly hard to bring new life into the world to look after the bodies

that do that and not being given the resources and the funding they need to do that job properly you know if the basic services that mean it’s safe to have a baby a precarious and this is I don’t have any answers to how we sustain

the future I really really don’t I’m not a demographic scientist I’m not a data scientist but I agree with you create the societal conditions in which if people want to make families they feel that that’s something that they can do safely with

Rupert

support and in whatever family configuration makes sense to them

Elinor

a lot of the problem I think is the overwhelming emphasis we have in our society on the heterosexual nuclear family unit you know I often read this thing and I’m sure you have too that you know women would love to have children but they can’t find

the partner I don’t know about this but I do think that the emphasis on on the nuclear family being the like the convention the right way to bring up children that you’d think we’d evolve beyond but I really don’t think we have no how about we we make it possible for friends to raise and have children together

for you know different kind of parenting communities and again I’m being very utopian like why can’t we just have this come on yeah but I think what’s at the

Rupert

heart of what you’re saying it’s just like it comes back to what we’re saying about chronic illness as well it’s really complex it’s multifaceted and there’s no easiest so so start listening start listening to people absolutely listen to the people

Elinor

who are experiencing this I’m you know I’m fed up and I’m sure so many of us are with reading the the research the reports be it about chronic illness experience or be it about the so-called fertility crisis that are not engaging with the people who actually understand this who are making these decisions who are living lives

through the prism of these experiences like I want to like give us the qualitative research right give us the large scale multinational qual research quantitative research is great but I want to hear something’s wrong but it doesn’t tell you what listen no exactly listen ask questions and listen and then begin to think about

social structures about services about what people need in order to imagine a

Rupert

future for themselves yeah yeah and and you know in in health as well yes absolutely in in well-being yeah and you know with well-being probably probably goes more kids and all of those things but yeah exactly I mean the if we I think

Elinor

healthcare provision is a huge part of this it’s a huge part of feeling that we can be optimistic about our futures, you know, in family making, as in imagining our lives into the future with chronic illness. You know, we want to imagine a future that we are part of, not that we are pushing against,

struggling against all the time. and I think these things have very close parallels and you know just listen to the people.

Rupert

Well I think that agentic strain clearly goes through both of your books but there seems to be a I would say there’s a kind of shift there from you know women as object to increasingly to women as subjects and daring to dream about what being a woman in the future in a preferred future might look like and

I think that’s a nice image to end it on. So thank you so much for your time and your expertise today. Thanks for giving us an insight into the contents of your book or both of your books and for linking it all together for us so beautifully. It’s been a pleasure to talk to you tonight.

Elinor

Oh, thank you so much for your fantastic questions, Rupert. And this was such a joy. So thank you for having me.

Rupert

It’s my pleasure.

Elinor

Goodbye.