March 10, 2022 • 41 mins
Following last week's episode with Kate Walsh, and her difficult journey to find a proper diagnosis for what turned out to be a brain tumor Arden and Julie Anne talk to Dr. Elinor Cleghorn author of Unwell Women : Misdiagnosis and Myth in a Man-Made World about the history of women and medical care, and practical tips on how to advocate for yourself as a woman at the doctor.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:09):
's no need distress. She's hello and welcome to another
(00:29):
episode of Lady of the Road. My name is Arte Marine,
coming to you from my boogie garage in Los Angeles, California.
You may know me from Insatiable on Netflix or I
don't know Shameless or Chelsea Lately with Me? Is my
very good friend Miss Julianne Robinson And what do people
(00:50):
know you from? Julianne I directed Bridget. I mean, there
you go. That's how you do it. That how you
do it. Julianne. I know that you and I are
both so excited about our next guests. We are just
to catch our listeners up. If you didn't hear our
podcast with the wonderful Kate Walsh from Private Practice and
(01:10):
Gree's Anatomy. First of all, you should definitely listen to that.
But in it we brought up something that we feel
very passionately about and that is personal to us and
I think is being of service to a lot of
women out there and something that's not always talked about,
but that how women have oftentimes historically been ignored when
they've tried to get medical attention if they feel like
(01:32):
something's wrong with their body. Kate had an experience where
she wasn't feeling well and she went to go to
seek help about it, and they just kept treating her
as though she was going through menopause, which, as she
explained in it, she had already been through early menopause.
They gave her zoloft and she's like, I don't want
this is I mean, maybe I need that for something else.
(01:53):
I'm but like, I don't think this is not. They
just she kept being dismissed as it an actress who
was just insecure, and she really really had to fight
and advocate for herself. And it turned out that in
the end she had an enormous brain tumor, which they
then you know, promptly had to remove and are wonderful.
Julianne here had a situation with the pilot directing a
(02:15):
few years ago. You sought attention, you didn't feel well,
something fell off, and you were handed the same thing, yeah,
heavy tranquilizes and being told it was stress related, and
then it turned out wasn't stress related at all. It's
a long story and everything's fine now, but I was
amazed at how often this happens. Yeah, and then the
(02:36):
more digging you do, the more you realize what we
were looking at. I was listening to an audio book
by Stephanie Winster Walcott and she was talking about it.
I mean, the list goes on and on. If people
who are told they have I think primarily it's stress related,
like you can't handle the stress of the situation you're in,
(02:56):
so we need to give you tranquilizers. And that was
It was so interesting talking to Kate because it just
seems so familiar, and that's why we wanted to talk
to you, doctor, because you are the expert in this area.
With us today, we are so excited. And it also
turns out that she has a book that all of
you listeners are going to be able to get. Her
(03:17):
name is Dr Eleanor Cleghorn, and she is zooming with
us all the way from England and she has a
background in feminist visual culture and history. Her critical writing
has been published in several academic journals, including Screen. She's
been a regular contributor to the education program at the
Tape Modern and i C A. London, and her nonfiction
(03:37):
debut Unwell, Women, Misdiagnosis and Myth in a Man Made
World is going to be published worldwide and In it,
she talks about her own experience with being, you know,
feeling not well, being told either that something was mentally
wrong with her, that was maybe a pregnancy, things like that,
and it turned out that she had something quite wrong
(03:59):
with her, and it took a long time for her
to advocate. So she did this research and she wrote
a book about it. Welcome to the podcast, Eleanor Cleghorne.
Thank you so much for having me. I'm so pleased
to be here. Well, I can't wait to read your book.
I know Julianne and I were so curious about this,
and you talk quite a bit in your book about
this has been going on for centuries. I mean, could
(04:21):
you talk a little bit about the history of this
up top? Yeah, of course. And so in the press
over the last few years, especially I think post me Too,
we've been hearing a lot of stories about how women's
experiences across all sectors of society are being invalidated, dismissed, distrusted, ignored,
and vilified. And I think that as part of this
(04:43):
wake of kind of really like cultural kind of attention
towards the importance of women's stories, that women's experiences with
the medical establishment are really coming to the four. So
in the press in the US and the press over
here in the UK, we get loads of headlines that's say,
things like doctors invalidate women's pain. We hear about how
(05:04):
conditions like heart disease are often dismissed in women, quite
often fatally. And so there's been a I feel like
there's been a real ground swell recently of realization that
the medical establishment is failing women. And one of the
primary ways it does this is by not listening to
women when they report their pain and other symptoms when
they first show up at the doctor's office. So when
(05:27):
I was first began researching, I thought, okay, so where
does all this come from? Like, what are the origins
of the situation we find ourselves in now? And I
began by researching the condition I have, which is called lupus,
And I went back and back and kept kind of
unraveling more and more stories about and well women, the
kind of metrosca dolls, and to get back to the
(05:47):
sort of beginnings of medical knowledge in ancient Greece, and
from there I wanted to tell this story that kind
of moved us up to the presence so we could
really figure out how these kind of attitudes towards women's pain,
these ideas about women's bodies, and these ideas about her
women's emotions that you were saying about symptoms getting dismissed distress,
(06:07):
how these ideas about women's emotions have been ingrained over
those centuries. So as for the history, the book is
about Western medicine, which is the kind of medical system
that in the UK and the US we will encounter
if we go to the emergency room or to any
and so beginning in ancient Greece and we have women
being treated as essentially kind of wounds on legs, and
(06:31):
from there what we can see is that the way
that medical knowledge began about women is in terms of
women's social status. So women's purpose then was to their children,
to be pregnant to their children, and so understanding of
their diseases focuses on their reproductive organs, primarily on the womb.
So from those really foundational ideas, from the thinking of
(06:55):
medical authorities like Hippocrates, who was a girl who's known
as kind of the father of Western medicine. From there
we get all these treaties about women's bodies that build
up over the centuries and then get sort of twisted
in terms of what the historical position and social position
of women is. So from ancient Greek we move into
(07:17):
the medieval period, which of course saw many women burned
as witches, many of whom were unwell, as I explore
in the books. So then we begin to see how
women's bodies are seen as distrustful, as devious, as potentially
corruptible based on the idea that their wounds are kind
of out of control. And so then we move into
(07:39):
getting towards more enlightened centuries like the eighteenth century, with
a big focus on emotion, and all these ideas about
women's erratic bodies and wild wounds are still very much
in play, even as medicine starts to become more of
a science and less of a mythology. So then you
have new ideas about the nervous system ill intertwined with
(08:01):
these ideas about women's mad, bad, and sad bodies. When
we get into the nineteenth century, with the professionalizations of
disciplines like lyne ecology and doctors are beginning to be
able to look inside women's bodies and see with instruments
like the speculum what's actually going on, but yet all
these mythologies about how women are, how women influence their
(08:23):
own pain and other symptoms are still in play. So
it's as if you've got this new objective knowledge sort
of imprinted on the top of old mythology. And then
we move through the nineteenth century and we get into
the age of objective and evidence based medicine where we
are now, and even when we can see X rays
or other forms of sort of diagnostic imaging and knowledge
(08:47):
about chronic diseases is coming forth, knowledge about antibodies is
breaking through. Still these pernicious ideas about who women are,
how they express themselves, how they can't handle emotions and
stress are still clinging on, and they're still influencing how
we come to interpret our understanding of women's illnesses and diseases,
(09:08):
which sort of brings us up through the very checkered
history of the last hundred or so years, which has
seen in some incredible medical advances for women, things like
the contraceptive hill, but also some incredible reckog things with
what it has meant to be a woman, sort of
colliding with these sort of authoritative ideas about gender in
(09:30):
our society. When I was directing Bridget and we were
in Castle Howard and I was talking to some of
the room monitors and they were so fascinating. They will
talking about regency, the regency era, and they were saying,
you know, the way that you're portraying the regency era
is it's different to how it actually was for women.
And they said, you know, if if a woman was
(09:52):
not perceived to be fulfilling her duty as a child
bearing woman, or she was getting too old, they would
just be carted off, an institutionalized and labeled insane. And
then the guy would you get a mistress or is
that true? Yeah? I mean the idea of that women
exist primarily to breed and that therefore all of their
(10:15):
illnesses and diseases are centered on whether or not they're pregnant,
whether or not they're having babies, is completely true. And
what such a weird paradox about that is, Yeah, if
women weren't fulfilling their sort of social duty of having babies,
then that in itself could be seen as an illness,
either a pathology of some kind, either a mental one
(10:36):
or a physical one. And certainly, you know the institutionalization
of women and putting women in asylums often did spring
from the idea that women were not fulfilling not sort
of towing the domestic line or kind of filling their
ordained potential. And oddly, you know, the way that understanding
of women's health is really pivoted around this idea of
(10:58):
reproduction social ideas around production. Reproduction is absolutely true, but
there's a paradox because women could be seen as pregnancy
was a cure, but then it was also an illness
in many ways. So it's like women couldn't win. You know,
they're reproductive, nature made them sick, but they're not fulfilling
that duty always make them also make them sick. So yeah,
(11:20):
women were at risk definitely of having their freedoms taken
from them by being pathologizing that way. I was wondering
if that was the source of some of this. So
many people that I know that there's symptoms being dismissed
as stress related symptoms. Yeah. Absolutely, there's such this hugely
long history of I mean, we've all heard of hysteria,
(11:42):
which is like the prime sort of slur that you
can throw a woman who's woman who's making a fuss, right,
So hysteria, the word hysteria comes from the Greek word
for womb for uterus, and in the nineteenth century especially,
it was really pathologized as an illness that didn't really
have any strict definitions, but was more whatever a male
(12:03):
doctor wanted it to be when he encountered a woman
who was had symptoms pain that couldn't be explained through
his own knowledge. So, yeah, this idea of hysteria, which
wasn't really a strict medical diagnosis at all, but more
a kind of insult or a slur or way of
sort of characterizing a woman as being overly emotional and
(12:25):
therefore sick. We now see that legacy where we might
go to see the doctor because of you know, chronic
joint pain and be told, oh, it's probably work stress.
You know, there's that historical legacy of hysteria lives on
that where a doctor is basically intonating, well, it's all
in your head. I can't help but think of even
(12:46):
just in all areas of society. I just keep thinking
of Tina phasebook when she was saying how if a
woman is strong or smart or doesn't want to sleep
with their colleague back in the day, everyone be like, oh,
she's crazy. It's just the easiest way to label, like
a strong woman with an opinion, Oh, she's crazy, she's crazy,
(13:06):
And just hearing you talk, you know that it almost
starts with the body. The terror of the body, the terror,
like it's such an easy blanket to sort of keep
women down. It's just sort of a catch all that's dismissive,
and it's interesting, it is, and when you're right that
if a woman wants to decipher herself, what she does
with her body, what she wants to do with her body,
(13:29):
then labeling her crazy is the ultimate way to you know,
take away her agency and autonomy around her own decisions.
And that was definitely something that comes up again and
again and again, and some of the research I did
for the book as if women wanted dare to sort
of deviate from what men wanted them to do or
what sort of patriarchal society wanted them to do, then
(13:52):
labeled them crazy, label them in the nineteenth century hysterical,
label them in the eighteenth century neurotic, and put them
all way until they figured out that being a wife
and mother and keeping quiet was better for their health
and less. You see this again and again, like being
a mother, being domestic and being the tonnal is a
(14:14):
way for women to stay healthy, and I think it's
something that isn't just historical. I think we're kind of
fed this insidious message now that you know, the healthiest
women are the ones who are sort of keep quiet
and stick to their side of the street. In terms
of what women are expecting to do with their lives
and bodies, it's interesting something that Arna and I are
very keen not to do is to come across this
(14:36):
kind of antique guy in some way. So what I'm
thinking when I'm listening to this is how interesting it's
going to be for my you know, I've got two
boys and and just for them to kind of be
aware of this, because it's something that I wasn't aware
of until very recently. And I think it's just it's
so much part of the culture. It's such a knee
(14:57):
jerk reaction to female behavior or whatever that it is
a really it's a really interesting thing for us to
just go back and look at it and really think
hard about it. I know I was thinking what you
were saying that I was thinking about how much my
upbringing was trained a certain way that I had it
in Green within me in certain ways I was supposed
(15:20):
to be and that I felt into like just that
I wasn't. And but that almost the bias even as
a woman, like the bias I had against myself in
a weird way, you know, it's untangling. It's sort of
like waking up from a weird dream. I completely agree that,
And I said this often that it's not the fault
(15:40):
of guys. It's the patriarchy and the aspects of patriarchy
that have allowed these attitudes towards women to be kind
of sustained over so long. And I also have two
sons who are eleven and thirteen, and similarly I think, well,
they're growing up in such a different world now, where
question is the consent of believing the importance of believing women,
(16:04):
of listening to what a woman says first before making
judgments about so listening to who she is rather than
watch making judgments about what she is are so important.
And it feels like everything is a teachable moment for boys,
But they have also so much of this kind of
burden of history to work through. And yet also to
(16:25):
Arden's point about internalizing this stuff, I completely agree to. Like,
when I was younger, you know, situations in my life
and situations when we're going to the doctor as the
one that I talked about when I was kind of
in my late teens and twenties and him sort of
saying things like, well, you know, you obviously like drinking,
(16:47):
so maybe you have a gout, which, by the way,
it's like a weird or tiny disease you get from
eating too much cheese. Maybe you have gout and me
going away and going or maybe I do have gout.
I do like cheese and just not questioning it because
right we've told you know, we're socializing conditioned to not
question this kind of authority. And that doesn't need to
(17:08):
necessarily come from men, but it's that I think the relationship.
Women are conditioned not to question somebody in authority, someone
who's like representative as this kind of authority where women
are subjugated and someone else is in charge of us.
This is so interesting. We're going to take a quick
break and come right back. I can't wait. I'm just
(17:28):
fascinated by this. Yeah, and we're back. Last on the
episode with Kate, Anna brought up how it's even harder
for people of color. Women that are people of color
and I do want it. Yeah. You know my mom
Iranian American woman who came here in her early twenties,
(17:51):
you know, went to college here, has lived here, it
has a career as an electrical engineer. Very smart woman,
very capable. Woman, knows herself very well and her body
very well. And I've kind of learned from her a
lot about like how to take care of myself. And
I remember growing up. You know, she's very white passing.
You know, you wouldn't know, oh, you know, where is
(18:12):
this woman? No one really questions or asks her where
she's from until she starts talking because she has an accent.
I remember growing up she'd always after a doctor's point
and be like, god, these you know, like this country,
Like everyone treats me like I'm an idiot because I
have an accent. And it's like, yes, I might not
speak like you, but I actually, like I'm a smart
human being. You know, I have like degrees, I've learned
(18:34):
a lot, Like I've lived in this country for a
while now. So she would always tell me, like, if
they try and tell you how you feel, you know,
like you've basically manifested it in your mind because you're
feeling this way or that always tell the doctor to
write down that they were the one that said that.
She's always said hold them accountable because if anything ever
comes up, you could be like, well this doctor said that,
(18:56):
and you know most of the time my doctors were men.
You know, She's like, if you force them, and that's
like also, I think goes to see like she's actually
very smart. She's already figured out how to gain the system.
I'm like, okay, fine, I will come back and find
you if anything goes wrong, because it's going to be
in my medical files. So she always said, tell them
to write it down that they themselves said that there's
(19:17):
nothing wrong with you. So the second they have to
be held accountable, maybe they'll start to be like, oh wait,
maybe I we should look further. So then, you know,
So I always thought that was good advice, and I
tell people that as much as I can for women
because we do, you know, especially as women of color.
And I'm very lucky because I'm white passing, but black
women have this problem. All the time. You were saying
that Serena Williams documentary that you saw, right, So I
(19:39):
saw she has an HBO sports documentary being Serena where
she had a very difficult pregnancy where she also has
a condition where she gets blood clots and then she
also it's called like pulmonary emulden something. Sorry I don't
know the exact medical term for it, but she couldn't
breathe a they're giving birth and they were just doing
tests like we don't know what's going on, and she
(20:00):
had to be like, no, I have this, like I've
had this before, Like please test for this test for
my lungs. Put ink in it. We need to like
see and they were just like, well, okay, if you
say so, and she's like no, like you have to
do this, like I'm going to die, and that everyone
around it was like if she literally didn't step up
and be like an advocate for herself, she would have
(20:20):
died in that moment. And it helps to, you know,
be a woman in a position of power like that.
But like she's Serena Williams and she had to be
like listen to me, which I thought was very telling
of how we just treat women and women of color
no matter who you are, And do you have tips
for how women can go armed to the doctor, Like
is there anything you would tell us to go to
(20:42):
help be the CEO of their own body, like my
mom used to say, and then that's great. I think
what Anna's mom does is incredible to hold them accountable
because you know, if you've got them writing down and
they're testing to what they've told you, then you know,
hopefully they can't gaslight you into believing that it was
down to something you did that you didn't get the
(21:03):
right diagnosis or treatment. I think that patient advocacy is
so important, and there are there are ways we can
do it. We can do things like something I did
was take like a diary just of my symptoms like
hers in my joints, or you know, something like that
like fevers, and it's all Sometimes you almost feel like
you're building up a case to defend yourself, but it
(21:24):
does help if you go in kind of armed with
that information and knowledge about your body. That's really sort
of straightforward. There was a really famous study that came
out in two thousand and one called The Girl who
Cried Pain about the gender pain gap, which we read
a lot about now. Then. This was the study that
showed that women definitely get offered tranquilizers and sedatives when
(21:45):
they report pain, whereas men get prescribed pain medication, and
in that study, it showed that the way that women
report their pain also affects how they are treated and
then if they're admitted for further diagnostic tests. So women
who were overly emotional or perceived rather as being overly
emotional or use too much descriptive language, or related their
(22:08):
pain like back to how it was affecting their lives
were much more likely to be dismissed as being anxious, depressed, stressed,
even hysterical, dare we say it. So there's this idea
that you can kind of moderate your behavior in order
to get better treatment. And I think, you know, knowledge
is power. You can be the CEO of your body
(22:30):
with knowledge, absolutely, but I think it has to go
two ways. You know, I don't think that women should
have to moderate their behavior in any way in order
to be treated properly. And a full understanding of the
fact that, you know, pain is subjective and women, people
who identify as women may well have a much more
(22:51):
emotional relationship to it. And that's okay. It's almost as if,
you know, we can be armed with knowledge as patients,
but we also need medical medical establishment to look past
those kind of implicit biases that go. Okay, a woman
who talks about how pains affecting her life is nothing
better modern day hysteric. I mean, it was absolutely revelatory
(23:15):
for me when I was talking to somebody and saying, oh, well,
this happened to me. And then they did more studies
and they found out that it was actually this. But
when somebody said to me, oh, yes, that happens all
the time. Women are dismissed as having stress related issues
all the time, that was hugely impactful. I didn't realize.
(23:37):
So I think knowledge really is power in that circumstance,
it literally changed my life, and I understood the history
of that and also just listen to what you're saying.
I was thinking about the history of this a little
bit in terms of the Stepford wives and how in
the fifties and the sixties women were put on this
(24:01):
kind of tranquilizing medication all the time when day and
I know my grandmother was I think people would be
very judgmental about her. Oh she's on pills. You know,
my grandmother was unpilled. Yeah, but that was what they did,
an electric shock tray. They gave her electric shock therapy. Yeah,
the fifties and sixties, and that even the Rolling Stones
(24:22):
had this song right about Mother's Little Helper, and the
lyric is something like, you know, she goes to the doctor,
but nothing's really wrong. She runs for the shelter of
a mother's little helper. And it was these what they
called minor tranquilizers that were prescribed two women, usually housewives,
usually like white housewives, the steps for wife type, who
(24:45):
would you know, be trying to fulfill this kind of
post war like perfect post war housewife, you know, keeping
with her new appliances and her lovely meals and her
PTA meetings, going quietly insane, well maybe not quietly insane,
but getting really mentally unwell, or maybe also being chronically
unwell and going to the doctor and asking for help
(25:06):
and being just kind of silenced with these very addictive
little pills or yeah, I didn't like you said, being
admitted for even more barbaric and brutal procedures like electric
shock therapy and in some instances, especially in the States,
for partial lobotanies as well, which was absolutely harrowing way
of you know, making women sort of returned to some
(25:29):
kind of domestic harmony in the fifties and early sixties.
So yeah, this idea that you know, they women need
to be kind of tidied up, neat and quit silenced.
I think it's something that's really sort of overridden medical
attitudes rather than looking at the root cause, just kind
of smoothing over which I wonder if why you know
(25:50):
it's still so common that women will be given tranquilizing
medication rather than pain relief, because if you can do
the work of sciencing, you don't have to listen to
women actually talk about her life and her feelings preparing
to talk to you. Today, I was doing a little
and there was an article about how men and women
do present differently in certain things. My mom kept going
(26:12):
to get X rays. They told her she played tennis elbow,
and then she was icing her arm and icing her arm,
and then she died completely out of the blue of
a massive heart attack. And they were saying, particularly with
heart disease, but with a lot of things, that women
our bodies are different, and that medical schools mostly just
teach from the male perspective, and that if you want,
(26:35):
there are courses that talk more about women's health, but
that people have to sign up for them. As sort
of electives, and that that it should all be equal,
because any doctor's office is going to have both equal
men and women. But it seems like it starts in
the medical schools. You know that women are much more
likely to be taken seriously if they go to the er,
if there's a female physician, that they luck out and
(26:58):
get that, they are more likely to survive something that
might be a heart attack or something that's coming in
that if they get a female doctor. Am I accurate?
And what I'm saying is that, yeah, I know, you
have completely right. In the early nineties, there was the
introduction of this concept called the Yentl syndrome, named after
(27:20):
the Barbera streisarm film where Yentel has to pass the
disguise herself as a boy so she can go to
Yeshiva and learn that tamiled. So there's women called Bundy
and Heley from the National Institutes of Health was saying
that look, in order to survive some health conditions and diseases,
a woman basically has to be a man because all
(27:40):
the diagnostic criteria and treatment guidelines and presentation symptom guidelines
are based on the normative standard of a white male body,
and so for years it wasn't There was no acknowledgement
at all that women did often present very very different
symptoms in the lead up to something like her cardiac
correct nest and there was no acknowledgement of this. And
(28:02):
one of the reasons for this use of the white
male bodies the standard is that women are fluctuating subjects.
We do in many ways have different physiology. Our hormones fluctuate,
which means that we would give different results in clinical
trials over the over the duration of our cycles, for example.
(28:22):
So it's just easier and less costly to just use
male in clinical trials. Plus as well, there was a
lot of fear around using women in drug trials and
clinical testing because women can potentially get pregnant, So even
women who are on really long time contraception or his
male partners had to have the sectones was still omitted
(28:43):
because the guideline were there, any woman with the potential
of childbearing might be negatively impact by the drug and
so had to be precluded from the trial. And it
wasn't until like that the National Institutes of Health began
to revise these guidelines and recommend for a diversity of
(29:03):
gender and also of ethnicity in clinical trials. And that's
really recent, really recent in the life of medical history.
You know, I was fully a teenager that was happening
when that's first happened. So yeah, we do. We battle
with being non normative, with being a subgroup. Anyone who
(29:25):
isn't white biologically this you know, it's this white male
guy is a subgroup in terms of what medicine understands
about us. And I think there are some shifts, but yeah,
it's extraordinary to think about. That's amazing. I read a
book called Normal Sucks by a writer called Jonathan Mooney,
and that is fascinating. I found the idea of normal,
(29:51):
what normal is in terms of high weight measurements, all
of that. You know, those lines that you see in
the doctor whether they thinking you want to not, those
all date back to some sometime in the fifties and
they were Harvard male undergraduates. That where all of that
idea of where normality even comes from in the first place.
(30:13):
So it really times with what you're saying about what
is even normal. Yeah, that's amazing. I didn't know about
that's extraordinary. I was also just thinking of one thing
that Kate said when she would have big follow up appointments,
she would bring a friend with her to the appointment,
like that the buddy system of when you get nervous,
like that, if you bring a friend that is like
(30:34):
good at asking questions that can advocate for you, because
I I know I get quite frightened when I go
to the doctor. I'm a very nervous patient. So you know,
if there's something actually really going on with my health
at some point in time, I think it would probably
behoove me to bring a level headed advocate with me.
Is that a good thing for people to do? Or Yeah,
I think that can be a brilliant thing to do,
(30:56):
especially you want someone to sort of be able to
test ad buy for you and to somebody maybe also
who's been through who knows what you've been through right
and can speak for you if it is difficult, because
the you know, the encounter, the medical encounter can be
really difficult for so many people, can be I think
(31:16):
truly traumatizing, and I don't think there's enough attention paid
to this about just how difficult that encounter in and
of itself can be to talk about your body, your feelings,
your sensations to somebody who you are already anticipating might
be hostile, might not believe you. It can be a
(31:36):
really traumatizing situation to be in. And I think like
bringing someone that you really trust and like, doesn't have
to be a partner of friends relative, like someone that
you know can speak for you if you find it difficult,
or who's just there to testify to what happened in
that room on that day could be like a real
source of comfort and like something that could be really empowering.
(31:58):
We're going to take a quickly and we'll be right
back with Dr eleanor Cleghorne, and we're back. This has
been so informative because it is as we were staying
before the break. It is a frightening thing. And it's
frightening even let's say you are the perfect white male Harvard,
(32:20):
you know, like I would still be terrified going in,
you know, and I was raised just to believe trust authority.
If that's what they say, that's what it is. And
I hate going to appointments enough that I'm not going
to pursue it further, like to the detriment of my health. Probably,
you know, my friend, I don't mean to just have
keep having war stories. But this was a friend of
mine who who's a mother, and her son was twelve
(32:44):
or thirteen and had quite a bit of leg pain
and he went She kept bringing him into the doctor
and asking for an m r and they wouldn't give
it to her. And then I kept like really begging
for an m r I numerous times when he was
in quite a bit of pain, and they were like,
you know, it's probably just growing pains, and you're gonna
(33:05):
have to deal with the fact that your baby boys
growing up and he's going to be in high school,
and like you need to deal with get over yourself.
And then one day at school his freshman year, like
I think it was like his first month of high school,
he couldn't walk, and she begged, begged for an m
r I, which they did not want to give her,
and it turned out he had staged four bone cancer.
(33:28):
Oh it just breaks my heart. But you know, like
she knew, and she knew earlier, and I mean, I'm
not saying it would have turned out differently, but like
a mother knows, and to be dismissed and maybe if
the dad had brought him down, I'm just saying like,
it just breaks my heart for everybody that hasn't been
(33:49):
listened to, it really does. I'm starting to be I'm
starting to be like emotional about it, but it's just
like it's just heartbreaking. That's truly heartbreaking. And actually, as
you say that, mothers, mothers do know, like you know,
you have that instinct and you know when my my
illness was diagnosed because when I was pregnant with my
(34:12):
second son, he had a heart condition that was slowing
his heart rate down and there was no they couldn't
figure out a reason why. And in the end it
turned out that it was me that my body was
creating these antibodies that were attacking his heart. And luckily,
you know, I was in the right place at the
exact right time, and I got referred to an incredible
(34:34):
fetal cardiac expert in London, and it just so happened
that she on that day she was able to see
on that scan what was happening, and then we had
a treatment plan in place. If that hadn't presented on
that day, like it wouldn't have been discovered, my illness
would have been diagnosed. And I think it was really
just a matter I mean, the care was fantastic, but
(34:55):
it was a real accident of luck that I had,
like a snographer who was really hate attention. I had
a doctor who was like, no, we're going to get
this for referral because it could have been such a
different situation. So it is truly heartbreaking that sometimes it
just comes down to this accident of luck of who
you've got in the room on that day to give
yourself permission, even though I know I was socialized to
(35:18):
be polite, don't make a fuss, don't make waves, you know,
go along to get along. But if in your heart
of heart you feel that something is wrong, be the
dog with a bone, just have your own back, bringing
your toughest friend, you know. And it's hard. I mean
it's hard because a lot of people can't afford numerous
you know, many many people don't have health insurance and
(35:39):
cannot afford numerous trips to the doctor. Yeah. Yeah, it
took me a long time, and it was just I
was very lucky that I had a great doctor who
was just as keen as I was to get to
the bottom of it. But if I hadn't, it's, like
you say, it's just complete fluke who you happen to
get and that was your second doctor, right, Yeah, yeah,
the first was he was very senior. He was very
(36:02):
senior doctor, very intimidating figure, and I was I was,
you know, oh, well maybe he's right. And then luckily
somebody else was willing to take up the course. Thank god,
Thank goodness. I do think that advocacy and opening up
and talking about it it's really helpful. Yeah. I just
think the more we talk about it and the more
(36:24):
people read your book, I think it's it's a huge.
It's huge. I feel like I have a lot of
learning to do still of where I hold myself back
in various areas. And which is what's fun about the podcast.
You know, we're talking about health, we've been talking about money.
We've been talking about you know, standing up for yourself
like things that we don't I don't talk about that much.
(36:44):
So this is this has been really wonderful for me.
Thank you so much for chatting with us. Oh, thank
you so much for having me. Is there anything that
we didn't talk about that you think that we should
have talked about? I think we we covered loads arranged
didn't We were from ancient Greek to me too, we
cond a lot of grounds. I'm always so please, I
mean infuriated, but also so pleased that this topic of
(37:08):
the relationship between women and the medical establishment is really
kind of tentacular and really reaches into other areas of
the conversation about what it means to be a woman,
what it means to kind of, you know, stand in
our truth and stand in our bearers women, and how
you know that programming we can begin to kind of
de program from those messages and kind of really explore
(37:29):
what it means to have internalized those messages. I mean,
my mom was like a real hippie and she still
told me like not to make her first, because you
don't want to seem like a fust part little birly girl.
So there's that kind of messaging too that I think
that being empowered to speak and being empowered to tell
us stories also needs to come with a cultural shift
(37:51):
towards listening and taking the time to listen to women's
stories and stories of marginalized people and stories of those
who are oppressed. We can advocate and hopefully others can listen.
And were you brought up to speak up? I think
you're always very good at setting up for yourself. Did
your family give messaging? I mean, I know it's slightly
different for you and your brother. I know that there's yeah.
(38:13):
I mean I was always kind of told to be
like a good Persian girl, just like kind of like
what your mom was describing, like quiet and polite and respectful.
Because I feel that you're very You're a very strong
woman who has her own back. Have you Have you
always been that way or is that a journey for you?
That's been a journey for me because I I started
to realize I was being overlooked because I was just
(38:36):
being so quiet. The thing is, my mom, while she
is very headstrong, she is like best of both worlds.
Like she's a very quiet like she has a thing
where she says, I don't I don't just talk to talk,
I talked to say something. So like she's very quiet
and polite and she doesn't say a lot, but when
she does, you're like listening, So like I at times
(38:58):
have that. But then I also my dad is very loud, bolsterous,
just you know, just screaming around everything. And I see
that and I think like he really, like my dad
stands up for himself in a way where you're like
you are the most obnoxious person. So I think I
kind of got best of both worlds, where I know
not to talk because I just want to talk and
(39:20):
like fill the silence. But then at the same time,
like seeing my dad so aggressively advocate for himself at
all times, I always think I need to be more
like that. I just need to say something when it
something is important to me. But I started out just
very quiet and scared and shy because of just like
culturally our world that I was raised in, where like
(39:40):
the boys stepped up and the girls were just you know,
we stayed. We we had to be polite and you know,
like basically just be quiet, honestly. And so I was
lucky to have a mom who was so strong in
that way. But at the same time, I have my
dad always constantly, you know, speaking out, So I always
look up to you and I respect you so much.
(40:03):
Dr eleanor Cleghorne's book Unwell, Woman, Misdiagnosis and Myth in
a Man Made World Once Again is available now wherever
books are sold, go buy it. Alaris, thank you so
much for joining us. This was such an honor. I
wish you all the success great luck with your book
(40:24):
and where can people find you? People can find me.
I'm at eleanor Cleghorn on Twitter and I'm pretty online,
so yeah, I come and say hi, and yeah, thank
you so much for having me. It's been a complete
joy in real honor. Thank you so much for joining us.
And my name is Art Marine along with my friend
(40:45):
Julie Anne Robinson and the Queen. Oh. I'm our email
is Lady Road Podcast at gmail. Julianne's instagram is Julienne
Robinson Director. I'm saying that for her because I know
it stresses her out. I'm our to Marine, M y R,
I N on all platforms, so follow us. We have
photos off of all of our episodes and we'll see
(41:07):
you next time. Bye bye bye by
's no need distress. She's hello and welcome to another
(00:29):
episode of Lady of the Road. My name is Arte Marine,
coming to you from my boogie garage in Los Angeles, California.
You may know me from Insatiable on Netflix or I
don't know Shameless or Chelsea Lately with Me? Is my
very good friend Miss Julianne Robinson And what do people
(00:50):
know you from? Julianne I directed Bridget. I mean, there
you go. That's how you do it. That how you
do it. Julianne. I know that you and I are
both so excited about our next guests. We are just
to catch our listeners up. If you didn't hear our
podcast with the wonderful Kate Walsh from Private Practice and
(01:10):
Gree's Anatomy. First of all, you should definitely listen to that.
But in it we brought up something that we feel
very passionately about and that is personal to us and
I think is being of service to a lot of
women out there and something that's not always talked about,
but that how women have oftentimes historically been ignored when
they've tried to get medical attention if they feel like
(01:32):
something's wrong with their body. Kate had an experience where
she wasn't feeling well and she went to go to
seek help about it, and they just kept treating her
as though she was going through menopause, which, as she
explained in it, she had already been through early menopause.
They gave her zoloft and she's like, I don't want
this is I mean, maybe I need that for something else.
(01:53):
I'm but like, I don't think this is not. They
just she kept being dismissed as it an actress who
was just insecure, and she really really had to fight
and advocate for herself. And it turned out that in
the end she had an enormous brain tumor, which they
then you know, promptly had to remove and are wonderful.
Julianne here had a situation with the pilot directing a
(02:15):
few years ago. You sought attention, you didn't feel well,
something fell off, and you were handed the same thing, yeah,
heavy tranquilizes and being told it was stress related, and
then it turned out wasn't stress related at all. It's
a long story and everything's fine now, but I was
amazed at how often this happens. Yeah, and then the
(02:36):
more digging you do, the more you realize what we
were looking at. I was listening to an audio book
by Stephanie Winster Walcott and she was talking about it.
I mean, the list goes on and on. If people
who are told they have I think primarily it's stress related,
like you can't handle the stress of the situation you're in,
(02:56):
so we need to give you tranquilizers. And that was
It was so interesting talking to Kate because it just
seems so familiar, and that's why we wanted to talk
to you, doctor, because you are the expert in this area.
With us today, we are so excited. And it also
turns out that she has a book that all of
you listeners are going to be able to get. Her
(03:17):
name is Dr Eleanor Cleghorn, and she is zooming with
us all the way from England and she has a
background in feminist visual culture and history. Her critical writing
has been published in several academic journals, including Screen. She's
been a regular contributor to the education program at the
Tape Modern and i C A. London, and her nonfiction
(03:37):
debut Unwell, Women, Misdiagnosis and Myth in a Man Made
World is going to be published worldwide and In it,
she talks about her own experience with being, you know,
feeling not well, being told either that something was mentally
wrong with her, that was maybe a pregnancy, things like that,
and it turned out that she had something quite wrong
(03:59):
with her, and it took a long time for her
to advocate. So she did this research and she wrote
a book about it. Welcome to the podcast, Eleanor Cleghorne.
Thank you so much for having me. I'm so pleased
to be here. Well, I can't wait to read your book.
I know Julianne and I were so curious about this,
and you talk quite a bit in your book about
this has been going on for centuries. I mean, could
(04:21):
you talk a little bit about the history of this
up top? Yeah, of course. And so in the press
over the last few years, especially I think post me Too,
we've been hearing a lot of stories about how women's
experiences across all sectors of society are being invalidated, dismissed, distrusted, ignored,
and vilified. And I think that as part of this
(04:43):
wake of kind of really like cultural kind of attention
towards the importance of women's stories, that women's experiences with
the medical establishment are really coming to the four. So
in the press in the US and the press over
here in the UK, we get loads of headlines that's say,
things like doctors invalidate women's pain. We hear about how
(05:04):
conditions like heart disease are often dismissed in women, quite
often fatally. And so there's been a I feel like
there's been a real ground swell recently of realization that
the medical establishment is failing women. And one of the
primary ways it does this is by not listening to
women when they report their pain and other symptoms when
they first show up at the doctor's office. So when
(05:27):
I was first began researching, I thought, okay, so where
does all this come from? Like, what are the origins
of the situation we find ourselves in now? And I
began by researching the condition I have, which is called lupus,
And I went back and back and kept kind of
unraveling more and more stories about and well women, the
kind of metrosca dolls, and to get back to the
(05:47):
sort of beginnings of medical knowledge in ancient Greece, and
from there I wanted to tell this story that kind
of moved us up to the presence so we could
really figure out how these kind of attitudes towards women's pain,
these ideas about women's bodies, and these ideas about her
women's emotions that you were saying about symptoms getting dismissed distress,
(06:07):
how these ideas about women's emotions have been ingrained over
those centuries. So as for the history, the book is
about Western medicine, which is the kind of medical system
that in the UK and the US we will encounter
if we go to the emergency room or to any
and so beginning in ancient Greece and we have women
being treated as essentially kind of wounds on legs, and
(06:31):
from there what we can see is that the way
that medical knowledge began about women is in terms of
women's social status. So women's purpose then was to their children,
to be pregnant to their children, and so understanding of
their diseases focuses on their reproductive organs, primarily on the womb.
So from those really foundational ideas, from the thinking of
(06:55):
medical authorities like Hippocrates, who was a girl who's known
as kind of the father of Western medicine. From there
we get all these treaties about women's bodies that build
up over the centuries and then get sort of twisted
in terms of what the historical position and social position
of women is. So from ancient Greek we move into
(07:17):
the medieval period, which of course saw many women burned
as witches, many of whom were unwell, as I explore
in the books. So then we begin to see how
women's bodies are seen as distrustful, as devious, as potentially
corruptible based on the idea that their wounds are kind
of out of control. And so then we move into
(07:39):
getting towards more enlightened centuries like the eighteenth century, with
a big focus on emotion, and all these ideas about
women's erratic bodies and wild wounds are still very much
in play, even as medicine starts to become more of
a science and less of a mythology. So then you
have new ideas about the nervous system ill intertwined with
(08:01):
these ideas about women's mad, bad, and sad bodies. When
we get into the nineteenth century, with the professionalizations of
disciplines like lyne ecology and doctors are beginning to be
able to look inside women's bodies and see with instruments
like the speculum what's actually going on, but yet all
these mythologies about how women are, how women influence their
(08:23):
own pain and other symptoms are still in play. So
it's as if you've got this new objective knowledge sort
of imprinted on the top of old mythology. And then
we move through the nineteenth century and we get into
the age of objective and evidence based medicine where we
are now, and even when we can see X rays
or other forms of sort of diagnostic imaging and knowledge
(08:47):
about chronic diseases is coming forth, knowledge about antibodies is
breaking through. Still these pernicious ideas about who women are,
how they express themselves, how they can't handle emotions and
stress are still clinging on, and they're still influencing how
we come to interpret our understanding of women's illnesses and diseases,
(09:08):
which sort of brings us up through the very checkered
history of the last hundred or so years, which has
seen in some incredible medical advances for women, things like
the contraceptive hill, but also some incredible reckog things with
what it has meant to be a woman, sort of
colliding with these sort of authoritative ideas about gender in
(09:30):
our society. When I was directing Bridget and we were
in Castle Howard and I was talking to some of
the room monitors and they were so fascinating. They will
talking about regency, the regency era, and they were saying,
you know, the way that you're portraying the regency era
is it's different to how it actually was for women.
And they said, you know, if if a woman was
(09:52):
not perceived to be fulfilling her duty as a child
bearing woman, or she was getting too old, they would
just be carted off, an institutionalized and labeled insane. And
then the guy would you get a mistress or is
that true? Yeah? I mean the idea of that women
exist primarily to breed and that therefore all of their
(10:15):
illnesses and diseases are centered on whether or not they're pregnant,
whether or not they're having babies, is completely true. And
what such a weird paradox about that is, Yeah, if
women weren't fulfilling their sort of social duty of having babies,
then that in itself could be seen as an illness,
either a pathology of some kind, either a mental one
(10:36):
or a physical one. And certainly, you know the institutionalization
of women and putting women in asylums often did spring
from the idea that women were not fulfilling not sort
of towing the domestic line or kind of filling their
ordained potential. And oddly, you know, the way that understanding
of women's health is really pivoted around this idea of
(10:58):
reproduction social ideas around production. Reproduction is absolutely true, but
there's a paradox because women could be seen as pregnancy
was a cure, but then it was also an illness
in many ways. So it's like women couldn't win. You know,
they're reproductive, nature made them sick, but they're not fulfilling
that duty always make them also make them sick. So yeah,
(11:20):
women were at risk definitely of having their freedoms taken
from them by being pathologizing that way. I was wondering
if that was the source of some of this. So
many people that I know that there's symptoms being dismissed
as stress related symptoms. Yeah. Absolutely, there's such this hugely
long history of I mean, we've all heard of hysteria,
(11:42):
which is like the prime sort of slur that you
can throw a woman who's woman who's making a fuss, right,
So hysteria, the word hysteria comes from the Greek word
for womb for uterus, and in the nineteenth century especially,
it was really pathologized as an illness that didn't really
have any strict definitions, but was more whatever a male
(12:03):
doctor wanted it to be when he encountered a woman
who was had symptoms pain that couldn't be explained through
his own knowledge. So, yeah, this idea of hysteria, which
wasn't really a strict medical diagnosis at all, but more
a kind of insult or a slur or way of
sort of characterizing a woman as being overly emotional and
(12:25):
therefore sick. We now see that legacy where we might
go to see the doctor because of you know, chronic
joint pain and be told, oh, it's probably work stress.
You know, there's that historical legacy of hysteria lives on
that where a doctor is basically intonating, well, it's all
in your head. I can't help but think of even
(12:46):
just in all areas of society. I just keep thinking
of Tina phasebook when she was saying how if a
woman is strong or smart or doesn't want to sleep
with their colleague back in the day, everyone be like, oh,
she's crazy. It's just the easiest way to label, like
a strong woman with an opinion, Oh, she's crazy, she's crazy,
(13:06):
And just hearing you talk, you know that it almost
starts with the body. The terror of the body, the terror,
like it's such an easy blanket to sort of keep
women down. It's just sort of a catch all that's dismissive,
and it's interesting, it is, and when you're right that
if a woman wants to decipher herself, what she does
with her body, what she wants to do with her body,
(13:29):
then labeling her crazy is the ultimate way to you know,
take away her agency and autonomy around her own decisions.
And that was definitely something that comes up again and
again and again, and some of the research I did
for the book as if women wanted dare to sort
of deviate from what men wanted them to do or
what sort of patriarchal society wanted them to do, then
(13:52):
labeled them crazy, label them in the nineteenth century hysterical,
label them in the eighteenth century neurotic, and put them
all way until they figured out that being a wife
and mother and keeping quiet was better for their health
and less. You see this again and again, like being
a mother, being domestic and being the tonnal is a
(14:14):
way for women to stay healthy, and I think it's
something that isn't just historical. I think we're kind of
fed this insidious message now that you know, the healthiest
women are the ones who are sort of keep quiet
and stick to their side of the street. In terms
of what women are expecting to do with their lives
and bodies, it's interesting something that Arna and I are
very keen not to do is to come across this
(14:36):
kind of antique guy in some way. So what I'm
thinking when I'm listening to this is how interesting it's
going to be for my you know, I've got two
boys and and just for them to kind of be
aware of this, because it's something that I wasn't aware
of until very recently. And I think it's just it's
so much part of the culture. It's such a knee
(14:57):
jerk reaction to female behavior or whatever that it is
a really it's a really interesting thing for us to
just go back and look at it and really think
hard about it. I know I was thinking what you
were saying that I was thinking about how much my
upbringing was trained a certain way that I had it
in Green within me in certain ways I was supposed
(15:20):
to be and that I felt into like just that
I wasn't. And but that almost the bias even as
a woman, like the bias I had against myself in
a weird way, you know, it's untangling. It's sort of
like waking up from a weird dream. I completely agree that,
And I said this often that it's not the fault
(15:40):
of guys. It's the patriarchy and the aspects of patriarchy
that have allowed these attitudes towards women to be kind
of sustained over so long. And I also have two
sons who are eleven and thirteen, and similarly I think, well,
they're growing up in such a different world now, where
question is the consent of believing the importance of believing women,
(16:04):
of listening to what a woman says first before making
judgments about so listening to who she is rather than
watch making judgments about what she is are so important.
And it feels like everything is a teachable moment for boys,
But they have also so much of this kind of
burden of history to work through. And yet also to
(16:25):
Arden's point about internalizing this stuff, I completely agree to. Like,
when I was younger, you know, situations in my life
and situations when we're going to the doctor as the
one that I talked about when I was kind of
in my late teens and twenties and him sort of
saying things like, well, you know, you obviously like drinking,
(16:47):
so maybe you have a gout, which, by the way,
it's like a weird or tiny disease you get from
eating too much cheese. Maybe you have gout and me
going away and going or maybe I do have gout.
I do like cheese and just not questioning it because
right we've told you know, we're socializing conditioned to not
question this kind of authority. And that doesn't need to
(17:08):
necessarily come from men, but it's that I think the relationship.
Women are conditioned not to question somebody in authority, someone
who's like representative as this kind of authority where women
are subjugated and someone else is in charge of us.
This is so interesting. We're going to take a quick
break and come right back. I can't wait. I'm just
(17:28):
fascinated by this. Yeah, and we're back. Last on the
episode with Kate, Anna brought up how it's even harder
for people of color. Women that are people of color
and I do want it. Yeah. You know my mom
Iranian American woman who came here in her early twenties,
(17:51):
you know, went to college here, has lived here, it
has a career as an electrical engineer. Very smart woman,
very capable. Woman, knows herself very well and her body
very well. And I've kind of learned from her a
lot about like how to take care of myself. And
I remember growing up. You know, she's very white passing.
You know, you wouldn't know, oh, you know, where is
(18:12):
this woman? No one really questions or asks her where
she's from until she starts talking because she has an accent.
I remember growing up she'd always after a doctor's point
and be like, god, these you know, like this country,
Like everyone treats me like I'm an idiot because I
have an accent. And it's like, yes, I might not
speak like you, but I actually, like I'm a smart
human being. You know, I have like degrees, I've learned
(18:34):
a lot, Like I've lived in this country for a
while now. So she would always tell me, like, if
they try and tell you how you feel, you know,
like you've basically manifested it in your mind because you're
feeling this way or that always tell the doctor to
write down that they were the one that said that.
She's always said hold them accountable because if anything ever
comes up, you could be like, well this doctor said that,
(18:56):
and you know most of the time my doctors were men.
You know, She's like, if you force them, and that's
like also, I think goes to see like she's actually
very smart. She's already figured out how to gain the system.
I'm like, okay, fine, I will come back and find
you if anything goes wrong, because it's going to be
in my medical files. So she always said, tell them
to write it down that they themselves said that there's
(19:17):
nothing wrong with you. So the second they have to
be held accountable, maybe they'll start to be like, oh wait,
maybe I we should look further. So then, you know,
So I always thought that was good advice, and I
tell people that as much as I can for women
because we do, you know, especially as women of color.
And I'm very lucky because I'm white passing, but black
women have this problem. All the time. You were saying
that Serena Williams documentary that you saw, right, So I
(19:39):
saw she has an HBO sports documentary being Serena where
she had a very difficult pregnancy where she also has
a condition where she gets blood clots and then she
also it's called like pulmonary emulden something. Sorry I don't
know the exact medical term for it, but she couldn't
breathe a they're giving birth and they were just doing
tests like we don't know what's going on, and she
(20:00):
had to be like, no, I have this, like I've
had this before, Like please test for this test for
my lungs. Put ink in it. We need to like
see and they were just like, well, okay, if you
say so, and she's like no, like you have to
do this, like I'm going to die, and that everyone
around it was like if she literally didn't step up
and be like an advocate for herself, she would have
(20:20):
died in that moment. And it helps to, you know,
be a woman in a position of power like that.
But like she's Serena Williams and she had to be
like listen to me, which I thought was very telling
of how we just treat women and women of color
no matter who you are, And do you have tips
for how women can go armed to the doctor, Like
is there anything you would tell us to go to
(20:42):
help be the CEO of their own body, like my
mom used to say, and then that's great. I think
what Anna's mom does is incredible to hold them accountable
because you know, if you've got them writing down and
they're testing to what they've told you, then you know,
hopefully they can't gaslight you into believing that it was
down to something you did that you didn't get the
(21:03):
right diagnosis or treatment. I think that patient advocacy is
so important, and there are there are ways we can
do it. We can do things like something I did
was take like a diary just of my symptoms like
hers in my joints, or you know, something like that
like fevers, and it's all Sometimes you almost feel like
you're building up a case to defend yourself, but it
(21:24):
does help if you go in kind of armed with
that information and knowledge about your body. That's really sort
of straightforward. There was a really famous study that came
out in two thousand and one called The Girl who
Cried Pain about the gender pain gap, which we read
a lot about now. Then. This was the study that
showed that women definitely get offered tranquilizers and sedatives when
(21:45):
they report pain, whereas men get prescribed pain medication, and
in that study, it showed that the way that women
report their pain also affects how they are treated and
then if they're admitted for further diagnostic tests. So women
who were overly emotional or perceived rather as being overly
emotional or use too much descriptive language, or related their
(22:08):
pain like back to how it was affecting their lives
were much more likely to be dismissed as being anxious, depressed, stressed,
even hysterical, dare we say it. So there's this idea
that you can kind of moderate your behavior in order
to get better treatment. And I think, you know, knowledge
is power. You can be the CEO of your body
(22:30):
with knowledge, absolutely, but I think it has to go
two ways. You know, I don't think that women should
have to moderate their behavior in any way in order
to be treated properly. And a full understanding of the
fact that, you know, pain is subjective and women, people
who identify as women may well have a much more
(22:51):
emotional relationship to it. And that's okay. It's almost as if,
you know, we can be armed with knowledge as patients,
but we also need medical medical establishment to look past
those kind of implicit biases that go. Okay, a woman
who talks about how pains affecting her life is nothing
better modern day hysteric. I mean, it was absolutely revelatory
(23:15):
for me when I was talking to somebody and saying, oh, well,
this happened to me. And then they did more studies
and they found out that it was actually this. But
when somebody said to me, oh, yes, that happens all
the time. Women are dismissed as having stress related issues
all the time, that was hugely impactful. I didn't realize.
(23:37):
So I think knowledge really is power in that circumstance,
it literally changed my life, and I understood the history
of that and also just listen to what you're saying.
I was thinking about the history of this a little
bit in terms of the Stepford wives and how in
the fifties and the sixties women were put on this
(24:01):
kind of tranquilizing medication all the time when day and
I know my grandmother was I think people would be
very judgmental about her. Oh she's on pills. You know,
my grandmother was unpilled. Yeah, but that was what they did,
an electric shock tray. They gave her electric shock therapy. Yeah,
the fifties and sixties, and that even the Rolling Stones
(24:22):
had this song right about Mother's Little Helper, and the
lyric is something like, you know, she goes to the doctor,
but nothing's really wrong. She runs for the shelter of
a mother's little helper. And it was these what they
called minor tranquilizers that were prescribed two women, usually housewives,
usually like white housewives, the steps for wife type, who
(24:45):
would you know, be trying to fulfill this kind of
post war like perfect post war housewife, you know, keeping
with her new appliances and her lovely meals and her
PTA meetings, going quietly insane, well maybe not quietly insane,
but getting really mentally unwell, or maybe also being chronically
unwell and going to the doctor and asking for help
(25:06):
and being just kind of silenced with these very addictive
little pills or yeah, I didn't like you said, being
admitted for even more barbaric and brutal procedures like electric
shock therapy and in some instances, especially in the States,
for partial lobotanies as well, which was absolutely harrowing way
of you know, making women sort of returned to some
(25:29):
kind of domestic harmony in the fifties and early sixties.
So yeah, this idea that you know, they women need
to be kind of tidied up, neat and quit silenced.
I think it's something that's really sort of overridden medical
attitudes rather than looking at the root cause, just kind
of smoothing over which I wonder if why you know
(25:50):
it's still so common that women will be given tranquilizing
medication rather than pain relief, because if you can do
the work of sciencing, you don't have to listen to
women actually talk about her life and her feelings preparing
to talk to you. Today, I was doing a little
and there was an article about how men and women
do present differently in certain things. My mom kept going
(26:12):
to get X rays. They told her she played tennis elbow,
and then she was icing her arm and icing her arm,
and then she died completely out of the blue of
a massive heart attack. And they were saying, particularly with
heart disease, but with a lot of things, that women
our bodies are different, and that medical schools mostly just
teach from the male perspective, and that if you want,
(26:35):
there are courses that talk more about women's health, but
that people have to sign up for them. As sort
of electives, and that that it should all be equal,
because any doctor's office is going to have both equal
men and women. But it seems like it starts in
the medical schools. You know that women are much more
likely to be taken seriously if they go to the er,
if there's a female physician, that they luck out and
(26:58):
get that, they are more likely to survive something that
might be a heart attack or something that's coming in
that if they get a female doctor. Am I accurate?
And what I'm saying is that, yeah, I know, you
have completely right. In the early nineties, there was the
introduction of this concept called the Yentl syndrome, named after
(27:20):
the Barbera streisarm film where Yentel has to pass the
disguise herself as a boy so she can go to
Yeshiva and learn that tamiled. So there's women called Bundy
and Heley from the National Institutes of Health was saying
that look, in order to survive some health conditions and diseases,
a woman basically has to be a man because all
(27:40):
the diagnostic criteria and treatment guidelines and presentation symptom guidelines
are based on the normative standard of a white male body,
and so for years it wasn't There was no acknowledgement
at all that women did often present very very different
symptoms in the lead up to something like her cardiac
correct nest and there was no acknowledgement of this. And
(28:02):
one of the reasons for this use of the white
male bodies the standard is that women are fluctuating subjects.
We do in many ways have different physiology. Our hormones fluctuate,
which means that we would give different results in clinical
trials over the over the duration of our cycles, for example.
(28:22):
So it's just easier and less costly to just use
male in clinical trials. Plus as well, there was a
lot of fear around using women in drug trials and
clinical testing because women can potentially get pregnant, So even
women who are on really long time contraception or his
male partners had to have the sectones was still omitted
(28:43):
because the guideline were there, any woman with the potential
of childbearing might be negatively impact by the drug and
so had to be precluded from the trial. And it
wasn't until like that the National Institutes of Health began
to revise these guidelines and recommend for a diversity of
(29:03):
gender and also of ethnicity in clinical trials. And that's
really recent, really recent in the life of medical history.
You know, I was fully a teenager that was happening
when that's first happened. So yeah, we do. We battle
with being non normative, with being a subgroup. Anyone who
(29:25):
isn't white biologically this you know, it's this white male
guy is a subgroup in terms of what medicine understands
about us. And I think there are some shifts, but yeah,
it's extraordinary to think about. That's amazing. I read a
book called Normal Sucks by a writer called Jonathan Mooney,
and that is fascinating. I found the idea of normal,
(29:51):
what normal is in terms of high weight measurements, all
of that. You know, those lines that you see in
the doctor whether they thinking you want to not, those
all date back to some sometime in the fifties and
they were Harvard male undergraduates. That where all of that
idea of where normality even comes from in the first place.
(30:13):
So it really times with what you're saying about what
is even normal. Yeah, that's amazing. I didn't know about
that's extraordinary. I was also just thinking of one thing
that Kate said when she would have big follow up appointments,
she would bring a friend with her to the appointment,
like that the buddy system of when you get nervous,
like that, if you bring a friend that is like
(30:34):
good at asking questions that can advocate for you, because
I I know I get quite frightened when I go
to the doctor. I'm a very nervous patient. So you know,
if there's something actually really going on with my health
at some point in time, I think it would probably
behoove me to bring a level headed advocate with me.
Is that a good thing for people to do? Or Yeah,
I think that can be a brilliant thing to do,
(30:56):
especially you want someone to sort of be able to
test ad buy for you and to somebody maybe also
who's been through who knows what you've been through right
and can speak for you if it is difficult, because
the you know, the encounter, the medical encounter can be
really difficult for so many people, can be I think
(31:16):
truly traumatizing, and I don't think there's enough attention paid
to this about just how difficult that encounter in and
of itself can be to talk about your body, your feelings,
your sensations to somebody who you are already anticipating might
be hostile, might not believe you. It can be a
(31:36):
really traumatizing situation to be in. And I think like
bringing someone that you really trust and like, doesn't have
to be a partner of friends relative, like someone that
you know can speak for you if you find it difficult,
or who's just there to testify to what happened in
that room on that day could be like a real
source of comfort and like something that could be really empowering.
(31:58):
We're going to take a quickly and we'll be right
back with Dr eleanor Cleghorne, and we're back. This has
been so informative because it is as we were staying
before the break. It is a frightening thing. And it's
frightening even let's say you are the perfect white male Harvard,
(32:20):
you know, like I would still be terrified going in,
you know, and I was raised just to believe trust authority.
If that's what they say, that's what it is. And
I hate going to appointments enough that I'm not going
to pursue it further, like to the detriment of my health. Probably,
you know, my friend, I don't mean to just have
keep having war stories. But this was a friend of
mine who who's a mother, and her son was twelve
(32:44):
or thirteen and had quite a bit of leg pain
and he went She kept bringing him into the doctor
and asking for an m r and they wouldn't give
it to her. And then I kept like really begging
for an m r I numerous times when he was
in quite a bit of pain, and they were like,
you know, it's probably just growing pains, and you're gonna
(33:05):
have to deal with the fact that your baby boys
growing up and he's going to be in high school,
and like you need to deal with get over yourself.
And then one day at school his freshman year, like
I think it was like his first month of high school,
he couldn't walk, and she begged, begged for an m
r I, which they did not want to give her,
and it turned out he had staged four bone cancer.
(33:28):
Oh it just breaks my heart. But you know, like
she knew, and she knew earlier, and I mean, I'm
not saying it would have turned out differently, but like
a mother knows, and to be dismissed and maybe if
the dad had brought him down, I'm just saying like,
it just breaks my heart for everybody that hasn't been
(33:49):
listened to, it really does. I'm starting to be I'm
starting to be like emotional about it, but it's just
like it's just heartbreaking. That's truly heartbreaking. And actually, as
you say that, mothers, mothers do know, like you know,
you have that instinct and you know when my my
illness was diagnosed because when I was pregnant with my
(34:12):
second son, he had a heart condition that was slowing
his heart rate down and there was no they couldn't
figure out a reason why. And in the end it
turned out that it was me that my body was
creating these antibodies that were attacking his heart. And luckily,
you know, I was in the right place at the
exact right time, and I got referred to an incredible
(34:34):
fetal cardiac expert in London, and it just so happened
that she on that day she was able to see
on that scan what was happening, and then we had
a treatment plan in place. If that hadn't presented on
that day, like it wouldn't have been discovered, my illness
would have been diagnosed. And I think it was really
just a matter I mean, the care was fantastic, but
(34:55):
it was a real accident of luck that I had,
like a snographer who was really hate attention. I had
a doctor who was like, no, we're going to get
this for referral because it could have been such a
different situation. So it is truly heartbreaking that sometimes it
just comes down to this accident of luck of who
you've got in the room on that day to give
yourself permission, even though I know I was socialized to
(35:18):
be polite, don't make a fuss, don't make waves, you know,
go along to get along. But if in your heart
of heart you feel that something is wrong, be the
dog with a bone, just have your own back, bringing
your toughest friend, you know. And it's hard. I mean
it's hard because a lot of people can't afford numerous
you know, many many people don't have health insurance and
(35:39):
cannot afford numerous trips to the doctor. Yeah. Yeah, it
took me a long time, and it was just I
was very lucky that I had a great doctor who
was just as keen as I was to get to
the bottom of it. But if I hadn't, it's, like
you say, it's just complete fluke who you happen to
get and that was your second doctor, right, Yeah, yeah,
the first was he was very senior. He was very
(36:02):
senior doctor, very intimidating figure, and I was I was,
you know, oh, well maybe he's right. And then luckily
somebody else was willing to take up the course. Thank god,
Thank goodness. I do think that advocacy and opening up
and talking about it it's really helpful. Yeah. I just
think the more we talk about it and the more
(36:24):
people read your book, I think it's it's a huge.
It's huge. I feel like I have a lot of
learning to do still of where I hold myself back
in various areas. And which is what's fun about the podcast.
You know, we're talking about health, we've been talking about money.
We've been talking about you know, standing up for yourself
like things that we don't I don't talk about that much.
(36:44):
So this is this has been really wonderful for me.
Thank you so much for chatting with us. Oh, thank
you so much for having me. Is there anything that
we didn't talk about that you think that we should
have talked about? I think we we covered loads arranged
didn't We were from ancient Greek to me too, we
cond a lot of grounds. I'm always so please, I
mean infuriated, but also so pleased that this topic of
(37:08):
the relationship between women and the medical establishment is really
kind of tentacular and really reaches into other areas of
the conversation about what it means to be a woman,
what it means to kind of, you know, stand in
our truth and stand in our bearers women, and how
you know that programming we can begin to kind of
de program from those messages and kind of really explore
(37:29):
what it means to have internalized those messages. I mean,
my mom was like a real hippie and she still
told me like not to make her first, because you
don't want to seem like a fust part little birly girl.
So there's that kind of messaging too that I think
that being empowered to speak and being empowered to tell
us stories also needs to come with a cultural shift
(37:51):
towards listening and taking the time to listen to women's
stories and stories of marginalized people and stories of those
who are oppressed. We can advocate and hopefully others can listen.
And were you brought up to speak up? I think
you're always very good at setting up for yourself. Did
your family give messaging? I mean, I know it's slightly
different for you and your brother. I know that there's yeah.
(38:13):
I mean I was always kind of told to be
like a good Persian girl, just like kind of like
what your mom was describing, like quiet and polite and respectful.
Because I feel that you're very You're a very strong
woman who has her own back. Have you Have you
always been that way or is that a journey for you?
That's been a journey for me because I I started
to realize I was being overlooked because I was just
(38:36):
being so quiet. The thing is, my mom, while she
is very headstrong, she is like best of both worlds.
Like she's a very quiet like she has a thing
where she says, I don't I don't just talk to talk,
I talked to say something. So like she's very quiet
and polite and she doesn't say a lot, but when
she does, you're like listening, So like I at times
(38:58):
have that. But then I also my dad is very loud, bolsterous,
just you know, just screaming around everything. And I see
that and I think like he really, like my dad
stands up for himself in a way where you're like
you are the most obnoxious person. So I think I
kind of got best of both worlds, where I know
not to talk because I just want to talk and
(39:20):
like fill the silence. But then at the same time,
like seeing my dad so aggressively advocate for himself at
all times, I always think I need to be more
like that. I just need to say something when it
something is important to me. But I started out just
very quiet and scared and shy because of just like
culturally our world that I was raised in, where like
(39:40):
the boys stepped up and the girls were just you know,
we stayed. We we had to be polite and you know,
like basically just be quiet, honestly. And so I was
lucky to have a mom who was so strong in
that way. But at the same time, I have my
dad always constantly, you know, speaking out, So I always
look up to you and I respect you so much.
(40:03):
Dr eleanor Cleghorne's book Unwell, Woman, Misdiagnosis and Myth in
a Man Made World Once Again is available now wherever
books are sold, go buy it. Alaris, thank you so
much for joining us. This was such an honor. I
wish you all the success great luck with your book
(40:24):
and where can people find you? People can find me.
I'm at eleanor Cleghorn on Twitter and I'm pretty online,
so yeah, I come and say hi, and yeah, thank
you so much for having me. It's been a complete
joy in real honor. Thank you so much for joining us.
And my name is Art Marine along with my friend
(40:45):
Julie Anne Robinson and the Queen. Oh. I'm our email
is Lady Road Podcast at gmail. Julianne's instagram is Julienne
Robinson Director. I'm saying that for her because I know
it stresses her out. I'm our to Marine, M y R,
I N on all platforms, so follow us. We have
photos off of all of our episodes and we'll see
(41:07):
you next time. Bye bye bye by
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.