Overcoming the Burdens of Proof and Prejudice in Healthcare
[Music]
some might say i was born with a
superpower of resiliency i was born
during a blizzard in april
possibly a predictor of things to come
hmm
as an infant i had hip dysplasia so my
first five months of life were spent in
a hip sling as soon as that thing was
off
i skipped um crawling and just started
walking i had eye surgery at the age of
two chronic ear nose and throat
infections that led to surgery by the
age of 11.
i was overweight from childhood and
bullied so badly that i contemplated
suicide daily during sixth grade life
improved for me in high school and
college
till i was blindsided by the death of my
parents to cancers
an orphan by age 23 i had so many
learning curves
i survived events that should only exist
in horror movies like 911
gun violence sex assault being a hostage
a hurricane
three tornadoes
two lightning strikes domestic violence
poverty homelessness
an elevator accident
too many choking and drowning incidents
how am i alive
well i’ll let you in on a little secret
me and death have an ongoing friendly
competition
and so far i’m winning my prize
becoming the underdogs unsung
hero the impact from all those life
experiences was profound i developed
grit
the process of survival reflection
healing grieving and internal work to
overcome those traumatic events
took time
but i never gave up on myself i got
counseling became self-reliant
started speaking up
asked for help
it was up to me to stand up for myself
or no one else would
i became an expert in resilience and
survival
not because i wanted to but because i
had no other choice
my foundation and resiliency and
self-advocacy prepared me for taking on
the most unexpected battle of my life my
health and overcoming the burdens of
proof and prejudice in health care
what are these burdens
the burden of proof
refers to the responsibility shared by
patients and providers to collect
evidence that proves a diagnosis or that
a particular treatment is medically
necessary
patients must communicate with their
doctors
about any symptoms and show proof when
possible
doctors
require tangible evidence via exams labs
imaging or special testing
to diagnose and treat patients
if the burden of proof can’t be
fulfilled
the patient may be left without a
diagnosis or treatment
the burden of prejudice
refers to the impact of prejudice or
discrimination bias affecting patients
whether or not the prejudice was
intentionally harmful
the type of prejudice you’re most likely
familiar with refers to the negative
impact of intentional discrimination
where a hostile and or rational attitude
or action is purposefully directed at
individuals or groups based on any of
their actual or perceived
characteristics such as race ethnicity
religion body type orientation and so
forth
what you may be unfamiliar with are the
health care decisions where the
prejudice is medical in nature and not
intended to be harmful for example
a provider giving a diagnosis when
they’re lacking up-to-date knowledge
about a disease and the prejudice
results in
a misdiagnosis that causes irrevocable
damage to their patient
another example is the exclusion of a
particular group of people because of
the criteria involved such as having a
specific blood type
the exclusion isn’t founded in a hateful
or irrational bias as it serves a
purpose
when we are young and or presumably
healthy we don’t consider the
possibility that our own bodies may one
day betray us
causing constant suffering
or repeated brushes with death
we aren’t taught
what to do if we find ourselves in poor
health health
or how to overcome the burdens of proof
and prejudice that await us
i learned the hard way
and i want to make it easier for you
in case you ever find yourself in my
position
to the average person i look perfectly
normal
i seem like another plush-sized pretty
boss lady you know going about her
business doing her thing
putting in work
people make snap judgments all the time
about what women who look like me can or
can’t do especially on the days i dare
to walk without my cane i have one
i might seem average but i assure you i
am as rare as it gets
my hematologist calls me
the pegasus patient
because i’m so rare
a doctor may see a patient like me once
in their lifetime
i am chronically sick
injured and disabled
some common health conditions i have are
type 2 diabetes asthma hypertension
gastroparesis anemia polycystic ovarian
syndrome neuropathy carpal tunnel gerd
tachycardia anyone have a hand dvt
and alopecia
i also have multiple injuries from a
2017 elevator accident that includes
injuries to my spine both knees hips and
shoulders and a concussion that caused a
mild traumatic brain injury or mtbi
cybar
there’s literally nothing mild about my
mtbi
so don’t get into an elevator accident
highly don’t recommend not a fan not a
fan
and last but not
but not least
i have two devastating diseases
you may have never heard of before today
which took me the longest to get
diagnosed due to the burdens of proof
and prejudice
the first of these awful diseases is an
ultra rare autoimmune neuromuscular
disease that causes severe muscle
weakness called lrp4 positive
myosinia gravis or mg
for short
for seven years
i had all of the clinical symptoms of mg
but tested negative for antibodies and
negative four times on an emg test that
helps confirm the mg diagnosis
instead of being considered to have
sero-negative mg i endured numerous er
visits hospitalizations and consults
where i was repeatedly gaslit dismissed
and refused treatment
finally in 2018 a compassionate
neuromuscular specialist
took me on as a patient
testing became available for a newly
discovered mg antibody and we learned i
was lrp4 positive
on my fifth
emg test my mg diagnosis was confirmed
and i began treatment
one major burden of proof with mg was
the ability to show my symptoms
my symptoms rarely showed up
all at once
or severe enough during appointments to
confirm clinical symptoms
the providers wanted to see it to
believe it but i was missing the proof
i didn’t know how to help my doctors
help me
i reached out for guidance from the mg
community
learning ways to better advocate for
myself i started a symptom journal
taking selfies and videos
gathering evidence to show my symptoms
in action was key
in getting my providers to listen and
take me seriously
the last comorbidity of mine is the one
that took me the longest to get
diagnosed
this disease is actually quite common in
america but often misunderstood
it’s called sjogren’s disease
formerly sjogren’s syndrome
the sjogren’s foundation says that as
many as 4 million americans
have sjogren’s syndrome with an
estimated 2.5 million
patients undiagnosed
nine out of ten sjogren’s patients are
women
most doctors still think sjogren’s is a
disease that only causes extremely dry
eyes and mouth but it’s so much more
according to the shograms foundation
symptoms often vary from patient to
patient including and severity
while many patients experience dry eyes
dry mouth fatigue and joint pain
sjogren’s can also cause dysfunction of
organs such as the kidneys gastro
gastrointestinal system blood vessels
lungs liver pancreas and the central
nervous system
patients also have a higher chance of
developing lymphoma
what is most interesting to me
is that my sjogren’s diagnosis was
confirmed in august 2021
but many clinical sjogren’s symptoms
were evident since early childhood
this year
at 39 years old
i began experiencing new and worsening
symptoms
i was examined by multiple specialists
who ran labs imaging specialized testing
i tested positive for the ssa antibody
and had a positive lip biopsy
my shogring’s diagnosis was confirmed
while i am happy to be diagnosed and
getting treatment i wonder
how on earth
did this diagnosis evade 30 years worth
of doctors
why
did i suffer
needlessly with undiagnosed sjogren’s if
it’s such a common disease
i have done a really good job
with my self-advocacy so what went wrong
the burden of prejudice was the biggest
barrier to my sjogren’s diagnosis
the doctors evaluated my symptoms but
individually and failed to see them as
coming from one single systemic disease
sjogren’s has a lot of symptom overlap
with other diseases because of the many
organs and systems involved
so if a provider doesn’t know enough
about sjogren’s they won’t suspect it
and therefore won’t test for it my
provider’s lack of education and updated
info about sjogren’s disease was
detrimental to my health care resulting
in severely delayed diagnosis and a lack
of appropriate treatments causing
permanent bodily damage due to disease
progression
in my attempt to get correctly diagnosed
i experienced medical gaslighting
providers insisted their diagnosis was
correct
when i knew in my gut it wasn’t
i was told i couldn’t possibly have mg
or sjogren’s and that my symptoms were
due to
obesity anxiety or in my head
when i brought medical records and
peer-reviewed articles to my
appointments i was treated like a
hypochondriac
reminded of my status as a female and
told not to be a google doctor i let my
doctors know i had an msn in counseling
and i knew how to conduct scholarly
research but they didn’t care
their title held authority and mine
meant nothing
i was discriminated against for being a
woman in pain and dismissed as a drug
seeker
the burden of prejudice i experienced
was so awful it influenced my avoidance
of health care and decision to leave the
usa and move to a third world country
despite not having a confirmed diagnosis
or treatment
i knew that what i had was real and it
was serious i thought i was dying
i preferred to spend whatever time i had
left in the tropics with someone i loved
who i thought loved me i almost died
but thankfully i didn’t
2015 i returned to the u.s to restart my
life in pursuit of the right diagnoses
the burden of prejudice due to gender
bias is happening to women everywhere
a 2018 article from the new york times
by camille noel pagan
said that
research shows that both doctors and
nurses prescribe less pain medication to
women than men after surgery even though
women report more frequent and severe
pain levels
and a university of pennsylvania study
found that women waited
16 minutes longer than men to receive
pain medication when they visited an
emergency room
women are also more likely to be told
their pain is
psychosomatic
or influenced by emotional distress
and in a survey of more than 2
400 women with chronic pain 83 percent
said they felt they had experienced
gender discrimination from their health
care providers
another important burden of prejudice is
racism
it can still be found in all aspects of
health care from individuals to
hospitals institutions textbooks med
schools health policies clinical trials
studies and the list goes on and on
racism
plays a detrimental role in the
quality of and access to healthcare
people of color are experiencing
unsurprisingly the intersectionality of
racism and gender bias towards women has
created the most undeniable and
unconscionable disparity in health care
according to a may 2021 article in this
latest by julia craven
black people who give birth in the u.s
are three times as likely to experience
maternal death during or aft or after
delivery as their white peers who
themselves die at a higher rate than in
any other comparably wealthy nation
there’s no definitive reason for this
atrocious outcome but systemic racism
poor healthcare access apathetic
clinicians and weathering all play a
role in why the phenomenon transcends
class and educational lines in a 2019
study on how birthing people are treated
by clinicians
22.5 percent of black patients reported
experiencing some type of mistreatment
black babies are also at risk since they
are more likely to be born premature
and more likely to die when treated by
white doctors
and when black women have access to
black doulas
they are more likely to survive birth
and the period afterward
we cannot ignore this travesty
patients like me
with complex health conditions rare
diseases injuries and disabilities as
well as those who are healthy often
experience challenges with overcoming
the burdens of proof and prejudice
let this be our call to action
to uproot our current system and release
ourselves from these burdens
in the meantime we can be proactive
self-advocate
ask questions research
speak up for ourselves
show your proof
bring your records symptom journals pics
and vids
if we all participate in the improvement
of health care in ways that are
meaningful
we can rise together in resilience and
empower one another as we strive for
better health thank you