Ive had COVID19 for a year. Heres what Ive learned

[Music]

i have two daughters

both born naturally and without an

epidural

and i’m not telling you this to make you

squeamish

but to highlight that i’m not a

lightweight when it comes to pain

so when i say that covet 19 was the

worst pain that i’ve ever experienced in

my life

i’m not exaggerating covet 19 almost

killed me

several times and before you think

surely this woman must be sickly or

had pre-existing health conditions prior

to

spring of 2020 i will also share with

you

that i had none i’m a person who’s never

really sick

i don’t get the flu each year i don’t

smoke cigarettes i’m not a heavy drinker

i eat healthy i exercise regularly

i have no autoimmune diseases my

genetics are strong

my great-great-grandmother lived to be

98

my great-great-grandfather 103

my great-grandmother 99. my grandmother

would still be alive today had she not

lost her battle with covet 19.

my doctors described me as being

medically boring

you should also know i’m a professor and

social epidemiologist

so given that i’m a health expert i was

surprised

when doctors showed a pattern of not

listening to me

and not believing me when i came to them

for help

but that’s exactly what happened when i

initially got sick back in march 2020

i knew something was wrong but i didn’t

think it was covet 19.

i didn’t fit the description i was young

and fit

but knowing what we know now about covet

19 and looking back

i had just taken a trip from amsterdam

to paris

and i was on one of the last flights

allowed back into the u.s

there were sick people on my flight

there was a guy

coughing the whole way i only saw two

people wearing masks

and i was not one of them when i landed

the tsa

workers were not wearing masks they had

a

pile of ppe gear piled on the desk

unopened my plane landed on march 2nd of

2020

and roughly 10 days later i started

experiencing my first symptoms

my husband daughters and i were all sick

at

about the same time for about a week but

i just kept getting sicker

at one point it felt like an elephant

had sat on my chest

and i thought oh my am i having a heart

attack

i called my doctor and he prescribed a

z-pack

later that night i experienced my first

bout of chills and that’s when my covid

19

roller coaster ride first began

very quickly in those first few weeks my

list of symptoms became a mile long

but doctors didn’t believe that i had

cove at 19.

by the third week of march i went to the

er for the first time

for severe shortness of breath i got

tested for the flu

and covet 19. i had one of the first

non-fda

approved tests in texas and my test came

back

negative so that’s one of the reasons

doctors thought i didn’t have covet 19

but i knew something was wrong so i was

asking myself had these doctors never

heard of false negatives

surely something was wrong with me my

actual test results

had a warning label on them that said if

the test comes back negative you need to

take the entire patient’s

history into account in march

a few days after going to the er the

first time

i landed again in the er for severe

shortness of breath

and the doctors said to me you don’t

have covet 19 because you don’t have a

fever

and the cdc symptom list says you have

to have a fever

to have covet 19. the nurse treating me

said i’ve been doing this for 30 years

she looked straight at me she took her

mask off

and said you’re not going to die you

have blood clots

not covet 19. after they did my ct scan

checking for blood clots and it came

back negative all masks were on

when they returned to the room i never

had a positive

covet 19 test and i never had a fever

but my oxygen levels would drop

regularly below 80 percent

and sometimes at night it would even get

down as low as 67 percent

after being released from the er i

followed up with my pcp provider in

april and when i told her that at night

sometimes my oxygen levels would drop

down to 67 percent

she told me that that wasn’t possible

and that my oxymeter must be broken

i explained to her that it was not and

she said to me

ma’am you don’t have covet 19 you have

anxiety

it must be broken because in her words

and i

quote ma’am your covet 19 test

came back negative by april

for about a week it seemed like things

were looking up for me

i had seen a lung specialist who had

prescribed me an anti-inflammatory

medication

that i’m sure saved my life so it’s hard

for me to be upset with him

about the fact that when i came to his

office with my husband

he spoke with my husband instead of me

it was like i was a nine-year-old girl

who had gone

to the office visit with her father

instead of a 38 year old woman with a

phd

he ignored all of my other symptoms

he tapped on my chest for two seconds

and then gave me

a diagnosis of a respiratory illness

he then proceeded to prescribe me

medication for anxiety

and left the room he’s the same doctor

who later prescribed me a prescription

for oxygen at home

but i was the one who told him that i

needed it and i figured that out by

accident

because during my second visit to the er

they put me on oxygen and i felt better

later news reports came out that oxygen

helped patients with covet 19. at this

point

it was clear to me that it was patients

and not doctors

who were ahead of the curve with covet

my lowest point came at the end of april

my mother and husband

found me shaking with my eyes rolled

back in my head

and i was rushed to the emergency room

and

while there doctors kept asking me again

and again

had i taken any drugs and i kept telling

them no

i hadn’t but doctors didn’t start

treating me with compassion until my

drug test

came back clean and all the neurologists

said to me

when my mri came back normal was that

covet 19

doesn’t cause seizures and my covet 19

test was negative

but later on news reports did indeed

show that

covet 19 can trigger seizures and it’s

the first known illness to break

the blood-brain barrier after that

terrifying

experience i sat in a dark room with the

curtains drawn

light and sound hurt the sound of

laughter from my daughter’s

hurt there were times when i needed

a cane to walk covet 19 had ravaged my

body

and left me with chronic fatigue

i had neurological problems so severe

that at one point i didn’t remember

my daughter’s birthdays and i would

forget

what i was doing in the middle of

whatever it is that i was doing

now i want to remind you that even

though my situation

is a nightmare and covet 19 is a novel

virus

i’m not special i am no different from

the people who have been struggling for

years with chronic diseases

it is estimated that 40 of americans

suffer from a chronic illness

one day they’re healthy and then they’re

not

some of these illnesses torment people

from birth to death

others like lyme disease or fibromyalgia

are mysterious

like covet 19 you’re healthy and then

you’re not

i’m telling you this to remind you that

given that 40

figure any one of us at any time

could get sick so what i’m about to say

next could apply to you research for

mysterious chronic

illnesses is underfunded and that’s

terrible

but what’s really worrying is the

pattern of medical providers

not believing their chronic disease and

covet 19 patients

it’s a pattern of not believing and not

giving their patients

especially female patients and patients

of color

the benefit of the doubt there is so

much research

on patients reporting doctors not

believing them

or not treating them with the same level

of compassion

it’s unbelievable and as a health

expert i knew these alarming statistics

going into it

but i didn’t think it would happen to me

let’s be real for a moment

we all have biases but doctors same as

with teachers

judges police officers they need to

train themselves to drop those biases

at the door when they enter their

workplace

doctors who practice medicine while

still holding on to their biases

or are simply burned out are violating

the trust of their patients

and trust is a key element to the

patient

physician relationship it’s time for

all of the medical community not just

some to move forward

here’s what i’m thankful for i’m

thankful for my new

male neurologist who did give me the

benefit of the doubt

it was such a relief when everyone else

i had encountered had discounted my

situation

i’m also thankful for my new female lung

doctor

she was the first doctor who actually

took the time

to look through my patient history

and when i told her about what happened

to me with my first lung doctor

she told me that almost 50 percent of

her female

patients have the same complaints i’m

also thankful for my new

male cardiologist and gastrologist who

instead of thinking that i was on drugs

or had anxiety actually

advocated for me to get the test that i

needed

my new pcp doctor spent time talking

with me about diabetes

she’s the complete opposite of my first

pcp doctor who told me just to exercise

more when my blood work came back

flagged with diabetes

clearly she didn’t know that covet 19 is

linked to diabetes and that covet 19

and rigorous exercise doesn’t mix

i’m lucky in that i could keep searching

for compassionate doctors

but i know that not everybody has that

luxury look

this pandemic has pushed doctors nurses

and other front line health care workers

to the brink

and i have a documented history of being

an

avid supporter of first responders and i

believe that many

deserve our deepest deepest thanks and

respect

but a lot of people with covet 19 were

sent away from hospitals

or overlooked and some of these people

died

because a doctor didn’t believe them

covet 19 has shown us that we need to

have a

serious discussion about the way

medicine is practiced

especially in the face of the unknown

doctors on average are an overachieving

bunch

otherwise they would have never have

made it so far educationally

and the worst thing for an overachiever

to admit

is that they don’t know

but in the case of covet 19 or the next

unknown virus doctors must learn to

accept that it’s okay

to say i don’t know that humility

can save lives from my perspective

listening and believing are the first

steps

in navigating the learning curve of a

new illness

making integrative medicine the norm is

the next step

i am happy to report that i’m a covet 19

survivor

i don’t like the label long hauler it

implies that i’m in this for the long

haul

and i am not i’m thankful

that i can stand here today and say that

i can get back to writing children’s

books with my daughters again

that i can read with them again that i

can dance with them again

i know there are so many women and men

around the world who contract at covet

19

and cannot stay the same thank you

you