Transcriber: Trang Phạm Reviewer: Elisabeth Buffard
By providing space for constant evolution,
we can all transform how we view ourselves and the world around us.
My name is Elle
and I am an unwell woman.
As the author Eleanor Cleghorn explains,
throughout history,
medicine has failed
and continues to fail women
by treating our bodies as unknowable.
She writes:
“Our diseases are not elusive to us,
but something about them seems to thwart and frustrate medicine at every turn.”
And the lives of unwell women depend on medicine, learning to listen.
I’m here to share my experience as an unwell woman.
But I'm not just an unwell woman. I’m a neuroscientist
whose expertise is mapping the dynamic interplay
between hormones and the brain.
In the course of my PhD training,
I’ve read hundreds of empirical articles
taking graduate level classes
and collaborated with experts in neuroscience and endocrinology.
I’m in a lab entirely dedicated to advancing women’s brain health.
I’m literally steeped in a world
that pays very careful attention to women’s bodies.
And yet, it took me two years
to figure out what was happening
with my hormones
and my brain and my body
to confirm that I have the most common endocrine disorder
called Polycystic Ovary Syndrome,
or PCOS,
which is characterized by ovarian cysts,
irregular menstrual cycles and elevated levels of androgen hormones
such as testosterone.
And you could say that I’m one of the lucky ones.
Two years could be considered fast for a PCOS diagnosis.
By some estimates, a typical diagnostic timeline,
So the time from the emergence of symptoms to an accurate diagnosis,
can be anywhere from 2 to 5 years.
Five years?
People earn a PhD in that time frame.
So why is it
that it can take up to half a decade
to diagnose a disorder that impacts 1 in 10 women?
Well,
I’m a case study for how the medical system treats women.
Let me walk you through how.
I remember back in middle school,
all of my friends and classmates getting their periods before me.
When I finally got mine,
it came in fits and starts, which was normal,
but then it just completely stopped.
To address this, I went to the pediatrician
when I was about 15 years old.
The doctor prescribed me with birth control
to regulate my periods
at a time when my brain and body were still developing.
She told me I wasn’t getting a period because I was a cross-country runner,
because of intense exercise.
And that was the end of discussion.
Like many other naive girls
going through puberty with an irregular cycle,
I was given birth control as a patch fix,
which avoided digging into the actual cause of my cycle abnormalities.
When I started grad school,
I went off of birth control for the first time
about a decade after starting it.
Doctors said my period should come within about a month,
three months max.
I didn't get a period for over six months.
I knew this wasn’t normal,
so I asked to have an endocrine panel run,
and I still recall receiving a notification
from the Student Health Portal
and just immediately poring over my results.
And there it was: a value that stood out from the rest.
My testosterone levels were significantly higher than the upper limit
of the reference range.
This made me think of something.
Was it possible that I had PCOS?
I knew that PCOS could only be confirmed with an ultrasound.
So I called up Student Health
and I scheduled an appointment with the OBGYN there.
Upon meeting with her, she brushed off my concerns about PCOS.
She told me I wasn’t getting a period because I was just stressed,
pointing to my role as a grad student,
as if I didn’t know that already.
There was absolutely no willingness to consider
that this might be something else,
something with roots tracing all the way back to adolescence.
Our menstrual cycle is a vital sign.
The rhythmic production of hormones
guides all sorts of physiological functions
throughout our bodies, including in our brains.
And mine was broken.
Even if it was a stress-related shift in my cycle,
it still should have been addressed.
So I push back
gently, but dogmatically,
asking that my symptoms be taken seriously.
Reluctantly, she said that if I was that adamant,
I could get an ultrasound.
And because I didn’t show some of the more typical physical characteristics of PCOS,
such as excessive body hair growth, loss of scalp hair or sudden weight gain,
she almost had me convinced
that all of my problems were just in my head.
And that was the problem.
Fast forward a couple of months,
I’m lying in a bed with three medical professionals
towering over me.
I can't see the ultrasound screen.
I just hear the doctor, the one who didn’t believe me, mutter:
“Oh yeah, you were right.”
and begins to roll the ultrasound machine away.
She’s about to walk out the door.
Meanwhile, I’m holding back tears
and swallowing a chronic diagnosis
that I know from my own research
has no known cause,
no cure,
and is the leading cause of infertility in women.
Before the door clicks shut,
I managed to squeak out.
“So what does this mean?”
She basically shrugs and tells me to go back on birth control,
- Ah, the cure-all! -
that I might need some help getting pregnant
and that of course, all of this could still be due to my stress.
Right, because I’m a grad student.
If that wasn't bad enough,
when I later call Student Health
to have my ultrasound records transferred an endocrinologist,
I learned that they weren’t saved.
I would need to redo an ultrasound to have any specialist review it
and to technically confirm my diagnosis.
Is this a disease not worth diagnosing?
Am I an individual not even worth keeping track of?
While waiting to redo the ultrasound and for the official diagnosis,
I also learned that I have high insulin and I’m at risk for diabetes,
another common symptom of PCOS.
I get put on a drug to kickstart my periods and lower my insulin,
but I can’t stomach it without being nauseous 24/7
and it doesn't help my condition.
I cycle through one general endocrinologist
and two reproductive endocrinologists
who all tell me,
“Oh, we’ll cross that bridge when you get there.”
when I bring up my concerns about infertility.
Only months later, when I return to Student Health
to redo my ultrasound,
do I finally meet with a clinician who believes me, who takes me seriously,
and who wants to help me now instead of when it matters,
which according to all the other doctors, is what I want to get pregnant.
Out of all the clinicians that I met with,
she’s the first to educate me about a dietary supplement
that has since helped to stabilize my condition.
But why did it take so long to get here?
Why did my institution of over 20,000 students,
44% of whom are women,
have only one practicing OBGYN at the time?
And why can it take more than two years
to diagnose a chronic disorder that impacts 10% of women?
I cannot help but wonder how much sooner I would have known about
and been able to address my condition
had that very first doctor not prescribe birth control as a patch fix
or if women’s voices were just taken seriously.
Why is it that the medical system is so unprepared
to answer questions about women’s health?
Well, ignorance is baked into the system.
For example, a survey of medical schools
found that 80% fail to include curricula on menopause,
which is something that half of the population experiences.
And if it’s included at all,
women’s health is defaulted to as an elective.
So basically, we’re telling doctors that it’s optional
not to understand 50% of their patients.
Failures such as these in our health care system
are likely related to the historical dearth
of female leadership in biomedical sciences
and in health care.
Homogeneity infuses itself into the very nature
of the questions that we ask
or that we fail to see altogether.
While I went through the mental agony
of not knowing what was happening with my body and being denied my symptoms,
many women experienced this in addition to unmanageable physical pain.
It's not just PCOS, it's endometriosis,
a condition where tissue from inside the uterus
grows outside the uterus, causing chronic pelvic pain.
It also impacts 1 in 10 women,
but it takes more than seven years on average to diagnose.
It’s pregnancy.
Even after anesthesia was created in the mid-19th century,
for years, women were expected to do their so-called duty
and suffer through childbirth without it.
It’s birth control.
We see a very similar pattern today where it’s just assumed
that women will go through the excruciating pain
of IUD insertion without any sort of anesthesia.
Since the beginning of time,
women's pain and women's bodies have not been taken seriously.
And I get it.
The irony of my situation is not lost on me.
I’m a female PhD student in neuro-endocrinology
in a lab shining a spotlight on women’s bodies.
So you could say that I’m slightly more in tune with this topic
than the average individual,
but I was still a victim of medicine’s ignorance.
I think that the worst part of my story is that it's not a unique one.
It’s a broader echo of medicine’s failure
to listen to women.
In response to this,
my goal is to find solutions
both empirically and policy wise,
so that other women don’t have to go through this.
In my role as a neuroscientist,
I’m leading a study to examine how PCOS and endometriosis
affect brain structure and function.
Understanding the neural impact of these grossly understudied
but extremely common disorders is one step towards characterizing what causes them.
And in my role as an unwell woman,
I hope that this year can be a first step
in influencing the next generation of women to be advocates for themselves
as they come to understand their changing bodies.
By incorporating aspects of the human condition specific to women,
such as endocrine disorders, pregnancy and menopause into the broader dialogue
and into curricula from elementary school health care classes
all the way up to medical school requirements,
we have the opportunity to transform medicine
so that it can finally serve women.
Our lives depend on it.
Thank you.
(Applause)