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