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