March 4, 2025 • 30 mins
Women in the United States face significant health care disparities compared to men. Season two of The Visibility Gap podcast, hosted by Dr. Jen Ashton, addresses various women's health issues, including mental health, maternity health and family building, menopause, and more.
In Episode 1, guest Marisa Zeppieri shares her difficult but inspiring health journey, emphasizing the importance of self-advocacy.
Health experts Dr. Wendy Kline and Dr. Margaret Rutherford reflect on Marisa's story by examining the challenges associated with the women's health gap and proposing potential solutions to this complex and consequential issue.
All Cigna Healthcare products and services are provided exclusively by or through operating subsidiaries of The Cigna Group. © 2025 Cigna Healthcare
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SPEAKER_03 (00:00):
Welcome to the Visibility Gap.
I'm Dr.
Jen Ashton.
Throughout this season, we'll betackling something vital, the
women's health gap.
Women have outnumbered men inthe United States since 1946,
yet they continue to facesystemic disparities in
(00:22):
healthcare, leaving millionswithout the quality of care they
deserve.
Women spend 25% more of theirlives in poor health, an average
of nine years.
And when it comes to researchfunding, diseases that primarily
affect women often receive farless investment.
These unseen disparities affectevery aspect of women's lives,
(00:46):
from their ability to work andcare for loved ones to their
overall well-being.
In this season of The VisibilityGap, a podcast presented by
Cigna Healthcare, we'll bringthese hidden challenges into the
light.
From the long shadows ofresearch inequality to the years
it can take women to receive anaccurate diagnosis.
(01:06):
This season, we'll talk toinspiring women who will share
their personal stories andexpert panels discussing what it
will take to create real,meaningful change.
It's time to confront what'sbeen overlooked and push for
progress.
To begin, today we'll hear froman incredible woman who
described her diagnosis asbittersweet because it took 15
(01:31):
years of suffering to get there.
Welcome, Marissa Zipieri.
SPEAKER_02 (01:36):
Hi, thanks for having me.
SPEAKER_03 (01:38):
How old were you when you first started to have
symptoms?
SPEAKER_02 (01:41):
I was about eight.
So when I was eight, we'relooking at the mid-80s.
We never heard the word lupus.
My mother and I never heard theword lupus.
We never really heard aboutautoimmune disease.
I feel like we were...
brushed off over and over againof just, she's a very fragile
child, she has allergies, she'svery thin, but there were so
(02:05):
many clear-cut criteria forlupus that were just missed over
and over again.
We were also very low economicas far as monetary.
We didn't have health insurance,and I don't know if that played
a role back then, but itdefinitely limited the amount of
(02:26):
medical care and the type ofmedical care that I can get.
Maybe I would have had answerssooner.
I'm not sure.
SPEAKER_03 (02:31):
You know, some patients don't walk in holding a
sign saying, I have this.
Sometimes it really does requirea lot of medical detective work
that has to be predicated onrespecting what the patient
shares with you, trusting thatthe patient knows his or her
(02:51):
body the best, and And thenworking together as a team to
get that answer.
Did anyone ever tell you, okay,it's not A, B, or C.
We're going to keep trying.
We're going to keep looking.
We're going to keep workingtogether until we find an
answer.
SPEAKER_02 (03:13):
Honestly, no.
No.
It always was brushed off withasthma and allergies.
SPEAKER_03 (03:21):
So Now, fast forward, you're given a
diagnosis of lupus.
As we now know, and this is notnew information, autoimmune
conditions tend to affect womenin a major way more than men,
disproportionately impact women.
(03:41):
What did it feel like when youfinally had the answer?
SPEAKER_02 (03:45):
My diagnosis moment was really interesting because
it A lot of the symptoms that Ihad had at that point for 15
years all happened finally atone time.
And I think if you're going backto what you just said, working
with your doctor, it's verydifficult with autoimmune
disease when you might go into adoctor's office one time and
(04:08):
maybe you have some low-gradefevers and you're tired.
But the next time you have arash, but you don't have any
fevers.
And it's sort of like you said,it's putting this puzzle
together, right?
I had a very specific triggerthat at 23 years old that I
think is what sort of pushed mybody to that brink.
And all of a sudden I was in thehospital and it's like all of
(04:29):
the symptoms happened at once.
So by them sending in infectiousdisease, rheumatology, they
started running all of thesetests.
I mean, probably over 100different diseases, some that we
never even really hear about.
But I was finally getting testedfor everything.
And within about three weeks, Ihad an answer.
SPEAKER_03 (04:51):
And did you finally feel seen at that point?
I mean, it must have been amixed bag of emotions, right?
Because on the one hand, there'sfear and anxiety about all these
tests that are being run.
And what if there's this, that,or the other diagnosis?
But On the flip side, was thererelief that maybe you felt
(05:11):
finally being evaluated orapproached in a way that was
appropriate?
SPEAKER_02 (05:18):
Absolutely.
I had a wonderfulrheumatologist, and she sort of
went through things that she waslooking for and talking to me
about MS, RA, lupus, Lyme, justin the infectious disease
doctor.
And I finally felt like someonewas taking me seriously.
they were able to see all of thesymptoms that I had happening.
(05:40):
I wasn't making them up.
Unfortunately, they just allhappened at once, so it was
really bad.
But when I used the wordbittersweet that you had
mentioned in the beginning, Iremember the rheumatologist when
she came in and not that she wasexcited, but she was so
confident and she was, I guess,you know, in a way, like, I
(06:01):
finally have an answer for you.
And so in that moment, it waslike, Okay, so I wasn't...
I hate to use the word crazy.
I don't like that word.
But all of those years where youalmost feel that way, here it is
in one word, but in abittersweet way of, I wish I
would have had this information15 years ago.
(06:21):
Like, I wish you were in my life15 years ago because so many
people missed it.
But now that I actually knowwhat it is, I can finally make a
plan and move forward.
SPEAKER_03 (06:31):
As the saying goes, you can...
most people can handle anything,but the unknown or not knowing
is oftentimes worse.
And that sounds like that wasreally your experience.
SPEAKER_02 (06:44):
I would agree with that 100%.
I think when I talk to otherpeople now trying to go through
a diagnosis and I think aboutjust what I went through, I
think every patient deserves thedignity of a diagnosis, but we
don't always get that in thisworld.
SPEAKER_03 (07:02):
And how have you navigated work and career with
respect to a chronic condition?
What has been your experiencewith sharing?
How much to disclose?
How much to share?
Particularly, let's say, in awork environment.
SPEAKER_02 (07:22):
I didn't want people to look at me as the sick girl.
I wanted to show them that I'mable to do this.
I love my job.
I work really hard.
The reality is it does affect.
It affects every day of my life.
And I realize the more upfrontfor me, I'm a pretty vocal
person anyway.
So the more upfront I am aboutwhat's going on with my body,
(07:45):
needing off for treatment days,letting them know that I have
lupus, what lupus is, if they'reinterested, that's worked the
best for me because I've beenable to find career choices and
employment where they will workwith me.
Yeah.
I know not everyone is in thatposition.
I've been really blessed in thatway.
But for me, just sort of puttingit all out on the table and
(08:09):
saying, can we make this work?
These are my limitations, but Imake up for it sort of in X, Y,
and Z, right?
SPEAKER_03 (08:16):
And you mentioned that at one point you had
considered entering thehealthcare field as a
profession, as a nurse.
My mom's a retired nurse, so avery...
admirable career, even that youwanted, were interested in that.
With the intimate experienceyou've had with the healthcare
(08:39):
system, what's your opinion ofit today?
What do you think goes well?
What do you think desperatelyneeds improvement?
SPEAKER_02 (08:49):
I think the wait time with, you know, certain
diagnosis for diseases is, it's,really out of control.
There needs to be more testing,quicker testing.
I wish that, I think, you know,in the way for doctors, knowing
that most people wait months tosee them, that 15 or 20 minutes,
(09:11):
like as a patient, you are justwaiting for that appointment.
You can't wait to get to thatappointment and you're just
hoping that they can help you.
And I always tell people, like,take a list of your symptoms or
things that have gone on becausethat day you may not be
exhibiting all of those.
But if doctors understood thatwe've been waiting for so long
to see them and to take usseriously and not, well, come
(09:34):
back in six months and let's seeif you're still having that.
And it just pushes that timeover and more and more.
I wish something like that wouldreally be looked at.
I do feel that, especially inthe last five years, because of
technology and because of howmuch stories are getting out
there now, that doctors arelistening.
(09:56):
Like my doctors are incredibleand they understand like, I do
know my body the best.
And so I know when something islupus-related, and I know when
something is completelydifferent, and I'm like, well,
I'm not really sure.
This has never happened before.
This might be somethingcompletely different.
And they listen to me now, andthey're like, okay, well, then
let's do A, B, and C, and let'sget to the bottom of this.
(10:17):
And I think it also comes downto, as the patient, advocating
for yourself, being outspoken,really not taking no for an
answer.
Or just saying, I'm notcomfortable leaving here with
that answer.
Can we discuss this for aminute?
Can we go a little bit further?
Can I get this test?
Or can I see this specialist?
At least ask.
(10:38):
Don't leave there just wishingthat you had said something.
Just speak up for yourself.
SPEAKER_03 (10:43):
And clearly, you are persistent and you are a
fighter.
How do you deal with thepsychological or emotional
consequences of what you wentthrough?
How are you not angry or riddenwith fear and anxiety?
You know, what if this happensagain?
(11:04):
I mean, you said you didn't feellike you were taken seriously.
How do you cope with thatmentally and emotionally?
SPEAKER_02 (11:15):
So if we had had this conversation, I'd say in
those first three or four yearsafter diagnosis, when I'd had a
couple of strokes, I waslearning how to walk again.
The anger was at probably alevel 10.
I just felt like for so manyyears, so many bad things had
happened.
And you do get a medical PTSD.
(11:37):
There is absolutely a PTSDelement that comes along with
this.
UNKNOWN (11:42):
Correct.
SPEAKER_02 (11:42):
And at some point you are going to have to face
that.
And I didn't, we didn't talkabout PTSD decades ago.
I never heard about it.
I just knew that I went fromsomeone that never had anxiety
to being angry and having fullblown anxiety attacks.
And I didn't understand what washappening on top of like the
(12:03):
physical symptoms that you'realready having right now, you're
having these emotional symptoms.
I needed to speak to someone.
I've done counseling here andthere over the years for
stretches, and I've had to workthrough those emotions.
And what happened to me when Iwas younger, I would not want
that to happen to anyone else.
(12:26):
And it definitely set the stagefor those years of my life, and
I can never get that back.
Normal.
Yeah.
Yeah.
SPEAKER_03 (12:53):
You
SPEAKER_02 (12:54):
know, be worried that maybe something really bad
is happening again.
That's part of just living witha chronic illness.
But I think it's learning thetools to get through those
moments.
And I've learned those through,you know, psychologists,
reading, different workshops.
And for me, just faith and a lotof prayer.
SPEAKER_03 (13:13):
Well, you are incredibly inspiring and
impressive.
And I know that...
not just your story, but yourspirit and your tips have helped
a lot of people.
So Marisa, thank you so much forhaving the courage and the
desire to share your story.
SPEAKER_02 (13:34):
Thank you.
I appreciate it.
SPEAKER_03 (13:38):
And to help us understand Marissa's story and
dive deeper into the specificimpacts the women's health gap
has on businesses, I'm joined bytwo incredible experts.
Dr.
Margaret Rutherford is aclinical psychologist with over
30 years of experience,specializing in treating
individuals and couples foranxiety, depression, and
(13:59):
relationship issues.
She is the author of PerfectlyHidden Depression, How to Break
Free from the Perfectionism thatMasks Your Depression.
And Dr.
Wendy Klein is a distinguishedhistory professor at Purdue
University and is a prominentauthority in the history of
women's health.
Her latest book, Exposed, TheHidden History of the Pelvic
(14:21):
Exam, marks her fourth majorpublication.
Welcome to both of you.
Thank you so much for beinghere.
Let's start big picture.
Women's health gap.
What do you think people don'tknow about it?
SPEAKER_01 (14:33):
What I hear all the time is women will say, my
doctor said I was tired, I wasanxious, you know, I need some
sort of medication.
And rather than actuallylistening, I'm sure you know
this stat, but it's been proventhat Doctors actually listen for
about 11 seconds to what you'resaying.
(14:54):
And then it becomes what's everin their head and who the last
person they saw, who's the nextperson they're going to see.
Just like Marissa, you don't getlistened to.
And they will attribute any kindof even somatic symptoms as
anxiety rather than perhapsactual medical problems.
SPEAKER_00 (15:15):
I would say one thing that's really powerful
about Marissa's story is thenumber of times she said, please
take me seriously.
And so I would say the takeawaythat most people don't know is
historically, after all, I'm ahistorian, but is how long
that's been an issue.
Women's stories, women's healthhas not been taken as seriously,
(15:39):
in part because women Theyhaven't been listened to, just
as you said, right?
The expectation is they're justsupposed to put up with what
they're struggling with.
They're not supposed to sharethose stories.
And it's really only in therecent past, really since the
1970s, that the whole concept ofpatient advocacy and sticking up
(16:02):
for yourself, asking the kindsof questions that Marissa
learned to ask started tohappen.
So it's a fairly recentphenomenon.
And because you
SPEAKER_03 (16:12):
are...
a historian, I can't resist butasking you to go back to what is
one of the earliest pieces ofevidence in history?
Is it with painting orliterature or combination of how
women are often dismissed whenit comes to their health and
complaints?
SPEAKER_00 (16:33):
Wow, that is a great question.
Well, I am a modern historian.
In modern history, how far backdoes it go?
Well, it goes back centuries.
But the most obvious one, if youdon't mind me speaking to
reproductive health, is the factthat women's reproductive parts
were hidden.
And it was against medievalChristian law to look inside a
(16:57):
woman.
And so...
female sexual organs weremysterious and different and
therefore taken less seriously,I guess, because the male
standard was the norm.
But in
SPEAKER_03 (17:09):
bringing up uterus and to kind of coalesce both of
your respective areas ofexpertise, the term
hysterectomy, hysteria, inwomen's reproductive health
history, Explain where that termcomes from.
SPEAKER_00 (17:54):
And that would be very dangerous, of course, and
leads to hysteria, insanity, etcetera.
And it's used as a justificationfor why women shouldn't go into
higher education.
Or just think.
Yeah, exactly.
Exactly.
So it's really embedded in ourhistory, which helps to explain
why it's so hard to then takeapart, right?
(18:16):
Because it's been around longerthan modern attitudes.
So it's
SPEAKER_03 (18:19):
embedded in our history, and then it gets
embedded in our psyche, right?
How do you think the
SPEAKER_01 (18:24):
fact that women seek medical treatment or seek mental
health treatment more mayconfound how they're being
treated?
I don't know the answer to thatquestion.
I
SPEAKER_03 (18:35):
just thought of it.
Well, what I think isinteresting about just that
observation is that, first ofall, in medicine and science and
public health, You know, it isimportant to make observations
and then attach a frequency ofthose observations.
You know, you want to know, areyou observing something that
happens a lot or are youobserving something that's rare?
(18:56):
But at the same time, we have tobe careful not to generalize and
force someone into a categorythat they may not fit in, right?
So your question, Margaret,which I think is oftentimes
talked about, is women seek...
treatment or diagnosis orattention for a complaint,
(19:17):
whether it's mental, physical,usually physical, more so than
men.
But yet, data shows us they arenot taken as seriously.
They face delays in diagnosis,delays in management, face less
aggressive treatment optionsoffered to them, and in many
cases, in many diseasesituations, have worse outcomes
(19:39):
for the same condition.
The flip side of that which Ithink is almost as dangerous, is
to assume that men are always sostoic and that they don't seek
attention.
You know, we have to be careful,and the pendulum has to swing in
both directions.
And I think that that is as muchof a problem in many ways,
(20:03):
overtreating or overassumingthat just because someone's a
man that they— will do or not dosomething.
But for women, we cannotcontinue to look at these
statistics and just do nothing,right?
Heart disease, mental illness,autoimmune conditions,
pregnancy, maternal mortality,the list just goes on and on.
(20:25):
Sure it does.
So what do you think are,obviously, there's a plethora of
risks that come with this gapfor healthcare for women.
What do you see as top of thatlist?
SPEAKER_00 (20:38):
I would say it goes back to issues about power and
legitimacy, like whose storymatters.
Again, I just have to bring usback to Marissa for a second,
what she went through and forhow many years, because she
wasn't taken seriously.
Fifteen years.
Yeah.
SPEAKER_03 (20:58):
And when she started, what I think is
interesting, and I would love tohear your opinion on this,
Margaret, as a psychologist, shewas eight years old.
So not only was she not takenseriously, by default it means
her mother was not takenseriously as a parent.
SPEAKER_01 (21:15):
Yes, I caught that and I thought, what in the
world?
I mean, it's one thing tobelieve there's some fabrication
or the child might be tooconfused about what's going on,
but her mother also was there.
You know, one of the things Ikept coming to mind when I was
listening to Marissa is thatI've been now a psychologist for
(21:37):
a long time, but one of the bestthings, I think, a best tool I
have in my toolkit is whensomeone's presenting with a
mental illness or mentalsymptoms, health symptoms,
emotional symptoms, is for me tosay, I need to think about this.
I'm not sure.
I don't know exactly what isgoing on.
That's the sign of it.
Of a good doctor, of a goodprovider.
(21:59):
And then you can say, I don'tknow.
I do think we do people adisservice by, women especially,
a disservice by not saying itcould be, in my field, it could
be anything from ADHD tobipolar.
It could be, you know, there arelots of things that these
symptoms and these aspects ofmental illness often coincide.
(22:23):
And, you know, you'll have alittle bit over here and a
little bit over here, and justknowing that that very unique
description or diagnosis ofsomebody that you're going to
treat is just so important foryou to take your time.
And as I always
SPEAKER_03 (22:40):
say,
SPEAKER_01 (22:41):
you
SPEAKER_03 (22:41):
can have more than one thing going on at a time.
Yeah, exactly.
SPEAKER_00 (22:44):
Yeah.
Can I jump in for a healthissues that women struggle with,
women and men, but in this case,women are complicated.
They involve potentiallypsychological, physical, lupus
has been hard to diagnose, andAnd they require listening to
(23:06):
the patient, right?
Because so much of this issubjective.
What are you feeling?
The problem is, as Marissaexperienced, you start to doubt
yourself if people stoplistening.
You pointed out, what is it, 11seconds?
11 seconds.
Right?
So...
we are kind of conditioned froma very young age to not
(23:28):
necessarily believe inourselves, but believe in the
expert.
You know, expertise is all welland good.
But when it comes to substitutefor what, to listening to your
body, which she kept saying, Ineed to listen to my body.
I am the authority.
Well, for centuries, we weretold the exact opposite.
You don't know what's going onwith your body.
Only your doctor can really tellyou that.
(23:48):
And so particularly incomplicated questions where you
can't do a biopsy or a, thereisn't a clear-cut case that
leads to a diagnosis.
It requires a conversation, adialogue, and respecting that
the person knows what they'reexperiencing.
They know their body better thananybody else.
And that doesn't really happenuntil we get the women's health
movement in the 1970s.
SPEAKER_03 (24:09):
And how much progress or lack thereof do you
think has been made since the1970s?
SPEAKER_00 (24:17):
That is a tricky question.
I will take it both ways and saythe one really important thing
that most people don't knowabout this is when we talk about
patient advocacy, regardless ifit's about women or men, but in
general, this idea that apatient has a right to speak up
for themselves, that is a directcorrelation to the women's
(24:37):
health movement.
Because up until then, where didyou get information, right?
It was in medical textbooks thatwere written for other experts
and that were intentionally madeto not be accessible to the lay
reader.
You couldn't Google something,right?
And it's in the 1970s when wesee the emergence of Our Bodies,
Ourselves and these books thatare written by women for women
(25:01):
with the idea that Of coursethis information is accessible,
right?
We can do our own research, wecan understand our bodies, and
we can teach ourselves.
We don't need to disrespect theexpert, but we can have access
to that knowledge as well.
The final message is we are theauthority of our bodies.
We know our bodies better thanthese doctors do, and we have a
(25:22):
right to speak up.
And that message really ended uptransforming the doctor-patient
relationships because peoplerealized they had that right to
speak up.
SPEAKER_03 (25:34):
What factors do you think make the gap for women in
healthcare worse?
Race, geography, socioeconomic,or
SPEAKER_00 (25:44):
all?
Gosh, all for sure.
It's really hard tocompartmentalize.
I think it's important torecognize that all of them play
a part.
And that That gets me to answer,I didn't quite answer the other
part of your question, which iswhat hasn't changed.
And I think what hasn't changedor has gotten worse is directly
related to all of those factors.
(26:04):
We know from Marissa's story,they didn't have health
insurance, right?
So class and economics plays ahuge role.
and access to good health care.
Race clearly does as well.
All of those, there's so muchevidence about racial
disparities as well playing afactor in here.
It's hard to compartmentalize.
(26:25):
As a women's health expert interms of history, I would still
argue that we're all here todaybecause there is such a clear
gap, generally speaking.
Even when you take all of theseother factors into account,
there's something about women'shealth care point blank that is
problematic.
(26:46):
So I would probably still putthat at the center of my list.
SPEAKER_03 (26:49):
We heard from Marissa what things helped her
along her process and herjourney with getting a
diagnosis, but then evensubsequently to living with a
chronic condition.
We also heard about the thingsthat did not help.
We know that she had a verysupportive mom, has a supportive
mom.
Obviously, friends and familyare very important.
(27:15):
What about the role of theworkplace?
Employers, managers,supervisors, coworkers.
How can that help or hurt womenin particular who are trying to
navigate the health system?
SPEAKER_01 (27:30):
Well, I think information and the fact that
the corporation, the company,however large or small, gives
attention to those things, givesattention to mental health, to
medical help, and gives theidea, the zeitgeist of the
(27:51):
company is one where we want youto take care of yourself, no
matter whether that'sphysically, medically, mentally.
Well, we want you to And we will
SPEAKER_00 (28:02):
help take care of you too.
(28:26):
That that is part of theiridentity.
That's how they approach,perhaps how they approach their
job, how they think about theworld.
And so kind of embrace thatthat's part of who they are and
respect it, I think, is reallyimportant too.
SPEAKER_03 (28:40):
And I would just add, this is, we're talking
about the women's health gap,but Men need to be involved in
this solution and thisdiscussion, and a lot are, which
is fantastic, but it's not awomen-only conversation.
Let's circle the wagonssituation.
(29:01):
This is a human issue that menand women need to
SPEAKER_00 (29:15):
participate in.
Just going back to the women'shealth movement, that idea of
patient advocacy started as awomen's issue, and it really
(29:36):
became an issue for everyone.
So I think the message that wemay focus here, but it's a model
that everybody could benefitfrom.
SPEAKER_03 (29:45):
Well said.
Thank you.
Dr.
Klein, Dr.
Rutherford, thank you so much.
I think this is just thebeginning of the important
issues that are all under thisumbrella of the women's health
gap, and the insights andperspectives that you both
shared I think are so powerfuland so interesting.
So thank you very much for beinghere and part of it.
(30:08):
Of course.
You're welcome.
Thank you.
UNKNOWN (30:10):
Thank you.
SPEAKER_03 (30:10):
And thank you to our listeners.
We hope this episode of TheVisibility Gap has helped you
and your loved ones feel seenand empowered.
If you found it valuable, pleasedon't forget to share it, like
it, and subscribe to stayconnected with us.
Welcome to the Visibility Gap.
I'm Dr.
Jen Ashton.
Throughout this season, we'll betackling something vital, the
women's health gap.
Women have outnumbered men inthe United States since 1946,
yet they continue to facesystemic disparities in
(00:22):
healthcare, leaving millionswithout the quality of care they
deserve.
Women spend 25% more of theirlives in poor health, an average
of nine years.
And when it comes to researchfunding, diseases that primarily
affect women often receive farless investment.
These unseen disparities affectevery aspect of women's lives,
(00:46):
from their ability to work andcare for loved ones to their
overall well-being.
In this season of The VisibilityGap, a podcast presented by
Cigna Healthcare, we'll bringthese hidden challenges into the
light.
From the long shadows ofresearch inequality to the years
it can take women to receive anaccurate diagnosis.
(01:06):
This season, we'll talk toinspiring women who will share
their personal stories andexpert panels discussing what it
will take to create real,meaningful change.
It's time to confront what'sbeen overlooked and push for
progress.
To begin, today we'll hear froman incredible woman who
described her diagnosis asbittersweet because it took 15
(01:31):
years of suffering to get there.
Welcome, Marissa Zipieri.
SPEAKER_02 (01:36):
Hi, thanks for having me.
SPEAKER_03 (01:38):
How old were you when you first started to have
symptoms?
SPEAKER_02 (01:41):
I was about eight.
So when I was eight, we'relooking at the mid-80s.
We never heard the word lupus.
My mother and I never heard theword lupus.
We never really heard aboutautoimmune disease.
I feel like we were...
brushed off over and over againof just, she's a very fragile
child, she has allergies, she'svery thin, but there were so
(02:05):
many clear-cut criteria forlupus that were just missed over
and over again.
We were also very low economicas far as monetary.
We didn't have health insurance,and I don't know if that played
a role back then, but itdefinitely limited the amount of
(02:26):
medical care and the type ofmedical care that I can get.
Maybe I would have had answerssooner.
I'm not sure.
SPEAKER_03 (02:31):
You know, some patients don't walk in holding a
sign saying, I have this.
Sometimes it really does requirea lot of medical detective work
that has to be predicated onrespecting what the patient
shares with you, trusting thatthe patient knows his or her
(02:51):
body the best, and And thenworking together as a team to
get that answer.
Did anyone ever tell you, okay,it's not A, B, or C.
We're going to keep trying.
We're going to keep looking.
We're going to keep workingtogether until we find an
answer.
SPEAKER_02 (03:13):
Honestly, no.
No.
It always was brushed off withasthma and allergies.
SPEAKER_03 (03:21):
So Now, fast forward, you're given a
diagnosis of lupus.
As we now know, and this is notnew information, autoimmune
conditions tend to affect womenin a major way more than men,
disproportionately impact women.
(03:41):
What did it feel like when youfinally had the answer?
SPEAKER_02 (03:45):
My diagnosis moment was really interesting because
it A lot of the symptoms that Ihad had at that point for 15
years all happened finally atone time.
And I think if you're going backto what you just said, working
with your doctor, it's verydifficult with autoimmune
disease when you might go into adoctor's office one time and
(04:08):
maybe you have some low-gradefevers and you're tired.
But the next time you have arash, but you don't have any
fevers.
And it's sort of like you said,it's putting this puzzle
together, right?
I had a very specific triggerthat at 23 years old that I
think is what sort of pushed mybody to that brink.
And all of a sudden I was in thehospital and it's like all of
(04:29):
the symptoms happened at once.
So by them sending in infectiousdisease, rheumatology, they
started running all of thesetests.
I mean, probably over 100different diseases, some that we
never even really hear about.
But I was finally getting testedfor everything.
And within about three weeks, Ihad an answer.
SPEAKER_03 (04:51):
And did you finally feel seen at that point?
I mean, it must have been amixed bag of emotions, right?
Because on the one hand, there'sfear and anxiety about all these
tests that are being run.
And what if there's this, that,or the other diagnosis?
But On the flip side, was thererelief that maybe you felt
(05:11):
finally being evaluated orapproached in a way that was
appropriate?
SPEAKER_02 (05:18):
Absolutely.
I had a wonderfulrheumatologist, and she sort of
went through things that she waslooking for and talking to me
about MS, RA, lupus, Lyme, justin the infectious disease
doctor.
And I finally felt like someonewas taking me seriously.
they were able to see all of thesymptoms that I had happening.
(05:40):
I wasn't making them up.
Unfortunately, they just allhappened at once, so it was
really bad.
But when I used the wordbittersweet that you had
mentioned in the beginning, Iremember the rheumatologist when
she came in and not that she wasexcited, but she was so
confident and she was, I guess,you know, in a way, like, I
(06:01):
finally have an answer for you.
And so in that moment, it waslike, Okay, so I wasn't...
I hate to use the word crazy.
I don't like that word.
But all of those years where youalmost feel that way, here it is
in one word, but in abittersweet way of, I wish I
would have had this information15 years ago.
(06:21):
Like, I wish you were in my life15 years ago because so many
people missed it.
But now that I actually knowwhat it is, I can finally make a
plan and move forward.
SPEAKER_03 (06:31):
As the saying goes, you can...
most people can handle anything,but the unknown or not knowing
is oftentimes worse.
And that sounds like that wasreally your experience.
SPEAKER_02 (06:44):
I would agree with that 100%.
I think when I talk to otherpeople now trying to go through
a diagnosis and I think aboutjust what I went through, I
think every patient deserves thedignity of a diagnosis, but we
don't always get that in thisworld.
SPEAKER_03 (07:02):
And how have you navigated work and career with
respect to a chronic condition?
What has been your experiencewith sharing?
How much to disclose?
How much to share?
Particularly, let's say, in awork environment.
SPEAKER_02 (07:22):
I didn't want people to look at me as the sick girl.
I wanted to show them that I'mable to do this.
I love my job.
I work really hard.
The reality is it does affect.
It affects every day of my life.
And I realize the more upfrontfor me, I'm a pretty vocal
person anyway.
So the more upfront I am aboutwhat's going on with my body,
(07:45):
needing off for treatment days,letting them know that I have
lupus, what lupus is, if they'reinterested, that's worked the
best for me because I've beenable to find career choices and
employment where they will workwith me.
Yeah.
I know not everyone is in thatposition.
I've been really blessed in thatway.
But for me, just sort of puttingit all out on the table and
(08:09):
saying, can we make this work?
These are my limitations, but Imake up for it sort of in X, Y,
and Z, right?
SPEAKER_03 (08:16):
And you mentioned that at one point you had
considered entering thehealthcare field as a
profession, as a nurse.
My mom's a retired nurse, so avery...
admirable career, even that youwanted, were interested in that.
With the intimate experienceyou've had with the healthcare
(08:39):
system, what's your opinion ofit today?
What do you think goes well?
What do you think desperatelyneeds improvement?
SPEAKER_02 (08:49):
I think the wait time with, you know, certain
diagnosis for diseases is, it's,really out of control.
There needs to be more testing,quicker testing.
I wish that, I think, you know,in the way for doctors, knowing
that most people wait months tosee them, that 15 or 20 minutes,
(09:11):
like as a patient, you are justwaiting for that appointment.
You can't wait to get to thatappointment and you're just
hoping that they can help you.
And I always tell people, like,take a list of your symptoms or
things that have gone on becausethat day you may not be
exhibiting all of those.
But if doctors understood thatwe've been waiting for so long
to see them and to take usseriously and not, well, come
(09:34):
back in six months and let's seeif you're still having that.
And it just pushes that timeover and more and more.
I wish something like that wouldreally be looked at.
I do feel that, especially inthe last five years, because of
technology and because of howmuch stories are getting out
there now, that doctors arelistening.
(09:56):
Like my doctors are incredibleand they understand like, I do
know my body the best.
And so I know when something islupus-related, and I know when
something is completelydifferent, and I'm like, well,
I'm not really sure.
This has never happened before.
This might be somethingcompletely different.
And they listen to me now, andthey're like, okay, well, then
let's do A, B, and C, and let'sget to the bottom of this.
(10:17):
And I think it also comes downto, as the patient, advocating
for yourself, being outspoken,really not taking no for an
answer.
Or just saying, I'm notcomfortable leaving here with
that answer.
Can we discuss this for aminute?
Can we go a little bit further?
Can I get this test?
Or can I see this specialist?
At least ask.
(10:38):
Don't leave there just wishingthat you had said something.
Just speak up for yourself.
SPEAKER_03 (10:43):
And clearly, you are persistent and you are a
fighter.
How do you deal with thepsychological or emotional
consequences of what you wentthrough?
How are you not angry or riddenwith fear and anxiety?
You know, what if this happensagain?
(11:04):
I mean, you said you didn't feellike you were taken seriously.
How do you cope with thatmentally and emotionally?
SPEAKER_02 (11:15):
So if we had had this conversation, I'd say in
those first three or four yearsafter diagnosis, when I'd had a
couple of strokes, I waslearning how to walk again.
The anger was at probably alevel 10.
I just felt like for so manyyears, so many bad things had
happened.
And you do get a medical PTSD.
(11:37):
There is absolutely a PTSDelement that comes along with
this.
UNKNOWN (11:42):
Correct.
SPEAKER_02 (11:42):
And at some point you are going to have to face
that.
And I didn't, we didn't talkabout PTSD decades ago.
I never heard about it.
I just knew that I went fromsomeone that never had anxiety
to being angry and having fullblown anxiety attacks.
And I didn't understand what washappening on top of like the
(12:03):
physical symptoms that you'realready having right now, you're
having these emotional symptoms.
I needed to speak to someone.
I've done counseling here andthere over the years for
stretches, and I've had to workthrough those emotions.
And what happened to me when Iwas younger, I would not want
that to happen to anyone else.
(12:26):
And it definitely set the stagefor those years of my life, and
I can never get that back.
Normal.
Yeah.
Yeah.
SPEAKER_03 (12:53):
You
SPEAKER_02 (12:54):
know, be worried that maybe something really bad
is happening again.
That's part of just living witha chronic illness.
But I think it's learning thetools to get through those
moments.
And I've learned those through,you know, psychologists,
reading, different workshops.
And for me, just faith and a lotof prayer.
SPEAKER_03 (13:13):
Well, you are incredibly inspiring and
impressive.
And I know that...
not just your story, but yourspirit and your tips have helped
a lot of people.
So Marisa, thank you so much forhaving the courage and the
desire to share your story.
SPEAKER_02 (13:34):
Thank you.
I appreciate it.
SPEAKER_03 (13:38):
And to help us understand Marissa's story and
dive deeper into the specificimpacts the women's health gap
has on businesses, I'm joined bytwo incredible experts.
Dr.
Margaret Rutherford is aclinical psychologist with over
30 years of experience,specializing in treating
individuals and couples foranxiety, depression, and
(13:59):
relationship issues.
She is the author of PerfectlyHidden Depression, How to Break
Free from the Perfectionism thatMasks Your Depression.
And Dr.
Wendy Klein is a distinguishedhistory professor at Purdue
University and is a prominentauthority in the history of
women's health.
Her latest book, Exposed, TheHidden History of the Pelvic
(14:21):
Exam, marks her fourth majorpublication.
Welcome to both of you.
Thank you so much for beinghere.
Let's start big picture.
Women's health gap.
What do you think people don'tknow about it?
SPEAKER_01 (14:33):
What I hear all the time is women will say, my
doctor said I was tired, I wasanxious, you know, I need some
sort of medication.
And rather than actuallylistening, I'm sure you know
this stat, but it's been proventhat Doctors actually listen for
about 11 seconds to what you'resaying.
(14:54):
And then it becomes what's everin their head and who the last
person they saw, who's the nextperson they're going to see.
Just like Marissa, you don't getlistened to.
And they will attribute any kindof even somatic symptoms as
anxiety rather than perhapsactual medical problems.
SPEAKER_00 (15:15):
I would say one thing that's really powerful
about Marissa's story is thenumber of times she said, please
take me seriously.
And so I would say the takeawaythat most people don't know is
historically, after all, I'm ahistorian, but is how long
that's been an issue.
Women's stories, women's healthhas not been taken as seriously,
(15:39):
in part because women Theyhaven't been listened to, just
as you said, right?
The expectation is they're justsupposed to put up with what
they're struggling with.
They're not supposed to sharethose stories.
And it's really only in therecent past, really since the
1970s, that the whole concept ofpatient advocacy and sticking up
(16:02):
for yourself, asking the kindsof questions that Marissa
learned to ask started tohappen.
So it's a fairly recentphenomenon.
And because you
SPEAKER_03 (16:12):
are...
a historian, I can't resist butasking you to go back to what is
one of the earliest pieces ofevidence in history?
Is it with painting orliterature or combination of how
women are often dismissed whenit comes to their health and
complaints?
SPEAKER_00 (16:33):
Wow, that is a great question.
Well, I am a modern historian.
In modern history, how far backdoes it go?
Well, it goes back centuries.
But the most obvious one, if youdon't mind me speaking to
reproductive health, is the factthat women's reproductive parts
were hidden.
And it was against medievalChristian law to look inside a
(16:57):
woman.
And so...
female sexual organs weremysterious and different and
therefore taken less seriously,I guess, because the male
standard was the norm.
But in
SPEAKER_03 (17:09):
bringing up uterus and to kind of coalesce both of
your respective areas ofexpertise, the term
hysterectomy, hysteria, inwomen's reproductive health
history, Explain where that termcomes from.
SPEAKER_00 (17:54):
And that would be very dangerous, of course, and
leads to hysteria, insanity, etcetera.
And it's used as a justificationfor why women shouldn't go into
higher education.
Or just think.
Yeah, exactly.
Exactly.
So it's really embedded in ourhistory, which helps to explain
why it's so hard to then takeapart, right?
(18:16):
Because it's been around longerthan modern attitudes.
So it's
SPEAKER_03 (18:19):
embedded in our history, and then it gets
embedded in our psyche, right?
How do you think the
SPEAKER_01 (18:24):
fact that women seek medical treatment or seek mental
health treatment more mayconfound how they're being
treated?
I don't know the answer to thatquestion.
I
SPEAKER_03 (18:35):
just thought of it.
Well, what I think isinteresting about just that
observation is that, first ofall, in medicine and science and
public health, You know, it isimportant to make observations
and then attach a frequency ofthose observations.
You know, you want to know, areyou observing something that
happens a lot or are youobserving something that's rare?
(18:56):
But at the same time, we have tobe careful not to generalize and
force someone into a categorythat they may not fit in, right?
So your question, Margaret,which I think is oftentimes
talked about, is women seek...
treatment or diagnosis orattention for a complaint,
(19:17):
whether it's mental, physical,usually physical, more so than
men.
But yet, data shows us they arenot taken as seriously.
They face delays in diagnosis,delays in management, face less
aggressive treatment optionsoffered to them, and in many
cases, in many diseasesituations, have worse outcomes
(19:39):
for the same condition.
The flip side of that which Ithink is almost as dangerous, is
to assume that men are always sostoic and that they don't seek
attention.
You know, we have to be careful,and the pendulum has to swing in
both directions.
And I think that that is as muchof a problem in many ways,
(20:03):
overtreating or overassumingthat just because someone's a
man that they— will do or not dosomething.
But for women, we cannotcontinue to look at these
statistics and just do nothing,right?
Heart disease, mental illness,autoimmune conditions,
pregnancy, maternal mortality,the list just goes on and on.
(20:25):
Sure it does.
So what do you think are,obviously, there's a plethora of
risks that come with this gapfor healthcare for women.
What do you see as top of thatlist?
SPEAKER_00 (20:38):
I would say it goes back to issues about power and
legitimacy, like whose storymatters.
Again, I just have to bring usback to Marissa for a second,
what she went through and forhow many years, because she
wasn't taken seriously.
Fifteen years.
Yeah.
SPEAKER_03 (20:58):
And when she started, what I think is
interesting, and I would love tohear your opinion on this,
Margaret, as a psychologist, shewas eight years old.
So not only was she not takenseriously, by default it means
her mother was not takenseriously as a parent.
SPEAKER_01 (21:15):
Yes, I caught that and I thought, what in the
world?
I mean, it's one thing tobelieve there's some fabrication
or the child might be tooconfused about what's going on,
but her mother also was there.
You know, one of the things Ikept coming to mind when I was
listening to Marissa is thatI've been now a psychologist for
(21:37):
a long time, but one of the bestthings, I think, a best tool I
have in my toolkit is whensomeone's presenting with a
mental illness or mentalsymptoms, health symptoms,
emotional symptoms, is for me tosay, I need to think about this.
I'm not sure.
I don't know exactly what isgoing on.
That's the sign of it.
Of a good doctor, of a goodprovider.
(21:59):
And then you can say, I don'tknow.
I do think we do people adisservice by, women especially,
a disservice by not saying itcould be, in my field, it could
be anything from ADHD tobipolar.
It could be, you know, there arelots of things that these
symptoms and these aspects ofmental illness often coincide.
(22:23):
And, you know, you'll have alittle bit over here and a
little bit over here, and justknowing that that very unique
description or diagnosis ofsomebody that you're going to
treat is just so important foryou to take your time.
And as I always
SPEAKER_03 (22:40):
say,
SPEAKER_01 (22:41):
you
SPEAKER_03 (22:41):
can have more than one thing going on at a time.
Yeah, exactly.
SPEAKER_00 (22:44):
Yeah.
Can I jump in for a healthissues that women struggle with,
women and men, but in this case,women are complicated.
They involve potentiallypsychological, physical, lupus
has been hard to diagnose, andAnd they require listening to
(23:06):
the patient, right?
Because so much of this issubjective.
What are you feeling?
The problem is, as Marissaexperienced, you start to doubt
yourself if people stoplistening.
You pointed out, what is it, 11seconds?
11 seconds.
Right?
So...
we are kind of conditioned froma very young age to not
(23:28):
necessarily believe inourselves, but believe in the
expert.
You know, expertise is all welland good.
But when it comes to substitutefor what, to listening to your
body, which she kept saying, Ineed to listen to my body.
I am the authority.
Well, for centuries, we weretold the exact opposite.
You don't know what's going onwith your body.
Only your doctor can really tellyou that.
(23:48):
And so particularly incomplicated questions where you
can't do a biopsy or a, thereisn't a clear-cut case that
leads to a diagnosis.
It requires a conversation, adialogue, and respecting that
the person knows what they'reexperiencing.
They know their body better thananybody else.
And that doesn't really happenuntil we get the women's health
movement in the 1970s.
SPEAKER_03 (24:09):
And how much progress or lack thereof do you
think has been made since the1970s?
SPEAKER_00 (24:17):
That is a tricky question.
I will take it both ways and saythe one really important thing
that most people don't knowabout this is when we talk about
patient advocacy, regardless ifit's about women or men, but in
general, this idea that apatient has a right to speak up
for themselves, that is a directcorrelation to the women's
(24:37):
health movement.
Because up until then, where didyou get information, right?
It was in medical textbooks thatwere written for other experts
and that were intentionally madeto not be accessible to the lay
reader.
You couldn't Google something,right?
And it's in the 1970s when wesee the emergence of Our Bodies,
Ourselves and these books thatare written by women for women
(25:01):
with the idea that Of coursethis information is accessible,
right?
We can do our own research, wecan understand our bodies, and
we can teach ourselves.
We don't need to disrespect theexpert, but we can have access
to that knowledge as well.
The final message is we are theauthority of our bodies.
We know our bodies better thanthese doctors do, and we have a
(25:22):
right to speak up.
And that message really ended uptransforming the doctor-patient
relationships because peoplerealized they had that right to
speak up.
SPEAKER_03 (25:34):
What factors do you think make the gap for women in
healthcare worse?
Race, geography, socioeconomic,or
SPEAKER_00 (25:44):
all?
Gosh, all for sure.
It's really hard tocompartmentalize.
I think it's important torecognize that all of them play
a part.
And that That gets me to answer,I didn't quite answer the other
part of your question, which iswhat hasn't changed.
And I think what hasn't changedor has gotten worse is directly
related to all of those factors.
(26:04):
We know from Marissa's story,they didn't have health
insurance, right?
So class and economics plays ahuge role.
and access to good health care.
Race clearly does as well.
All of those, there's so muchevidence about racial
disparities as well playing afactor in here.
It's hard to compartmentalize.
(26:25):
As a women's health expert interms of history, I would still
argue that we're all here todaybecause there is such a clear
gap, generally speaking.
Even when you take all of theseother factors into account,
there's something about women'shealth care point blank that is
problematic.
(26:46):
So I would probably still putthat at the center of my list.
SPEAKER_03 (26:49):
We heard from Marissa what things helped her
along her process and herjourney with getting a
diagnosis, but then evensubsequently to living with a
chronic condition.
We also heard about the thingsthat did not help.
We know that she had a verysupportive mom, has a supportive
mom.
Obviously, friends and familyare very important.
(27:15):
What about the role of theworkplace?
Employers, managers,supervisors, coworkers.
How can that help or hurt womenin particular who are trying to
navigate the health system?
SPEAKER_01 (27:30):
Well, I think information and the fact that
the corporation, the company,however large or small, gives
attention to those things, givesattention to mental health, to
medical help, and gives theidea, the zeitgeist of the
(27:51):
company is one where we want youto take care of yourself, no
matter whether that'sphysically, medically, mentally.
Well, we want you to And we will
SPEAKER_00 (28:02):
help take care of you too.
(28:26):
That that is part of theiridentity.
That's how they approach,perhaps how they approach their
job, how they think about theworld.
And so kind of embrace thatthat's part of who they are and
respect it, I think, is reallyimportant too.
SPEAKER_03 (28:40):
And I would just add, this is, we're talking
about the women's health gap,but Men need to be involved in
this solution and thisdiscussion, and a lot are, which
is fantastic, but it's not awomen-only conversation.
Let's circle the wagonssituation.
(29:01):
This is a human issue that menand women need to
SPEAKER_00 (29:15):
participate in.
Just going back to the women'shealth movement, that idea of
patient advocacy started as awomen's issue, and it really
(29:36):
became an issue for everyone.
So I think the message that wemay focus here, but it's a model
that everybody could benefitfrom.
SPEAKER_03 (29:45):
Well said.
Thank you.
Dr.
Klein, Dr.
Rutherford, thank you so much.
I think this is just thebeginning of the important
issues that are all under thisumbrella of the women's health
gap, and the insights andperspectives that you both
shared I think are so powerfuland so interesting.
So thank you very much for beinghere and part of it.
(30:08):
Of course.
You're welcome.
Thank you.
UNKNOWN (30:10):
Thank you.
SPEAKER_03 (30:10):
And thank you to our listeners.
We hope this episode of TheVisibility Gap has helped you
and your loved ones feel seenand empowered.
If you found it valuable, pleasedon't forget to share it, like
it, and subscribe to stayconnected with us.
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