How Neurodivergence Shapes Chronic Pain And Medical Visits

Why Part Two Matters

SPEAKER_00
0:00

If
part
one
made
you
feel
seen,
part
two
is
where
things
start
making
sense.
We're
connecting
the
dots
between
neurodivergence
and
EDS,
unpacking
why
so
many
kids
are
misunderstood
and
what's
really
happening
inside
medical
appointments
when
patients
leave
feeling
dismissed.
We
talk
about
what
true
support
looks
like
in
schools,
in
care
teams,
and
at
home,
and
dive
into
pain,
how
to
understand
it,
how
to
manage
it,
and
the
tools
that
are
actually
helping.
But
more
than
anything,
this
is
about
what
needs
to
change
and
what
becomes
possible
when
lived
experience
meets
medicine.
If
you've
been
searching
for
answers
or
feeling
overlooked,
then
this
is
just
what
you're
looking
for.
So
stick
around.

Meet A Pediatrician Who Is Also

SPEAKER_00
0:49

Welcome
to
Indobattery,
where
I
share
my
journey
with
endometriosis
and
chronic
illness
while
learning
and
growing
along
the
way.
This
podcast
is
not
a
substitute
for
medical
advice,
but
a
supportive
space
to
provide
community
and
valuable
information
so
you
never
have
to
face
this
journey
alone.
We
embrace
a
range
of
perspectives
that
may
not
always
align
with
our
own,
believing
that
open
dialogue
helps
us
grow
and
gain
new
tools.
Join
me
as
I
share
stories
of
strength,
resilience,
and
hope.
From
personal
experiences
to
expert
insights.
I'm
your
host,
Alana,
and
this
is
Indobattery.
Charging
our
lives
when
Indometriosis
trains
us.
Welcome
back
to
Indobattery.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table.
Today
I
am
joined
by
my
guest,
Dr.
Sarah
Cohen
Solomon,
a
board-certified
pediatrician
and
specialist
in
hypermobile
ELERS
Downlow
syndrome
and
related
conditions,
including
POTS,
MCAS,
and
dysautonomia.
But
what
makes
her
perspective
especially
powerful
is
that
she's
not
just
a
physician,
she's
also
a
patient.
After
years
of
navigating
chronic
pain,
misdiagnoses,
and
medical
gaslighting
herself,
Dr.
Cohen
Solomon
now
combines
clinical
expertise
with
lived
experience
to
deliver
truly
whole
person
care.
Her
work
is
reshaping
how
we
understand
and
treat
complex,
often
overlooked
conditions,
especially
in
kids
who
are
too
often
dismissed.
Please
help
me
in
welcoming
Dr.
Sarah
Cohen
Solomon
to
the
table.
Part
one
was
just
a
brief
warm-up,
but
part
two
is
where
it
gets
good.
In
case
you
forgot,
this
is
where
we
left
off
and
where
we're
going.

Making Short Appointments Work

SPEAKER_00
2:34

As
a
patient,
I
sit
here
and
I'm
thinking,
I
wish
someone
would
have,
given
my
symptoms,
taken
a
whole
you
know,
assessment
of
head-to-toe,
which
is
hard
to
do
in
a
15-minute
appointment
the
way
that
our
system
is
built
currently,
right?
Like
you
have
15
minutes
as
a
doctor
to
like
really
get
to
the
to
the
crux
of
what's
going
on.
Impossible.
Absolutely
one
or
two
symptoms,
right?
And
so
that's
what
makes
it
really
hard,
I
think,
for
things
like
endometriosis
and
EDS
or
HEDS,
because
you're
not
given
the
time
needed
to
really
fully
assess
the
whole
system,
right?
We
are
given
a
silo
of
a
system
as
opposed
to
the
entire
system.
And
so
I
think
that's
what's
really
challenging,
but
there
are
some
key
things
that
we
can
be
asking
that
can
maybe
differentiate
what
direction
we
go.
As
a
patient,
how
should
we
walk
in
when
we
have
concerns
of
both
endometriosis
or
EDS?
What
are
some
main
questions
that
we
need
to
ask
when
we
walk
in
that
door?
15
minutes.
I
know,
right?

SPEAKER_02
3:37

Well,
that's
really
hard.
So
I
think
I
think
the
actual
number
one
thing
to
bear
in
mind
is
you
have
15
minutes.
Now,
if
it's
a
new
physician,
depending
on
the
department,
it
may
be
30
or
60
minutes.
It's
a
new
appointment,
it's
not
usually
15
minutes,
thank
goodness.
But
you
can
still
feel
tremendously
pressure
for
time.
So
depending
on
what
specialist
you're
going
to,
that's
going
to
adjust
how
you
address
the
concerns.
So
if
you're
in
a
gynecologist's
office
for
pelvic
pain
specifically,
then
lead
with
that.
So,
you
know,
you
go
in.
What
I
always
recommend
is
having
your
questions
written
down
because
being
in
front
of
the
doctor
is
scary.
I
am
clearly
a
very
scary
person,
but
nevertheless,
if
you're
carrying
in
all
of
the
history
and
the
trauma,
whoever
is
in
front
of
you
is
gonna
be
scary.
Always
am
frightened
when
I'm
in
a
new
doctor's
office.
Even
if
it's
a
colleague
that
I
know
of
and
know
I
can
trust,
I
go
in
and
have
to
calm
myself
down.
And
I'm
not
shy
in
saying
that
for
that
reason,
because
I
think
people
need
to
hear
it.
This
is
real.
Anywho,
prioritize
what
questions
are
relevant
to
that
physician.
Don't
go
to
the
gynecologist
and
start
asking
about
your
knee.
That's
not
gonna
help.
It
is
okay
to
have
a
list
of
all
the
symptoms.
I
actually
genuinely
recommend
having
ChatGBT
help
to
make
it
into
uh
a
easy
to
digest
format.
Just
make
sure
you
click
like
not
to
keep
your
data
in
ChatGBT.
Don't
let
that
happen.
But
it
can
be
really
helpful
in
making
it
a
one-pager
so
it's
not
too
overwhelming
for
the
physician.
This
is
important,
this
next
part.
Do
not
hand
a
big
long
list
of
symptoms
to
your
physician
and
expect
them
to
be
cool
with
that.
If
you
want
to
hand
them
a
list
of
symptoms
so
that
they
have
it,
let
them
know
that
you
are
and
please
make
this
true.
You
cannot
expect
them
to
fix
everything
in
one
appointment,
even
me,
and
I'm
set
up
for
it.
But
if
you
hand
them
a
list
of
symptoms
that
they
can
skim
and
you
can
say,
this
is
just
so
you
can
quickly
skim
it
because
I
know
our
time
is
limited,
then
they
will
take
that
with
understanding
that
you
know
that
their
time
is
limited
and
you
are
not
asking
them
to
solve
everything
on
the
list.
Okay.
But
I
do
recommend
prioritizing
by
how
much
it's
affecting
quality
of
life
or
how
worried
it
is
making
you,
for
example.
And
then
they
can
keep
that
in
the
chart,
but
like
again,
you
gotta
go
in
with
words
that
doesn't
make
it
sound
like
you
are
expecting
too
much
of
that
damn
15
minutes.
It's
not
their
fault.
It's
not.
Um,
now
how
we
behave
is
100%
up
to
us.
If
someone
is
behaving
inappropriately,
that
is
a
choice
by
the
human
in
front
of
you.
Okay.
The
15
minutes,
not
their
fault.
So
starting
with
that
prioritizing,
I
also
recommend
writing
down
um
what
what
you've
already
tried
that
has
or
hasn't
worked
because
that
gives
a
lot
of
data.
And
then
for
yourself,
what
you're
comfortable
saying
yes
or
no
to,
because
in
that
chair,
it's
again
very
scary.
And
you
can
accidentally
say
yes
to
things
that
you're
actually
not
comfortable
with,
especially
since
no
so
many
of
my
patients
are
neurodivergent
as
well.
There
can
be
a
communication
gap
where
if
you're
on
the
spot
like
that,
the
language
goes
out
the
window.
I've
seen
it
happen,
I've
had
it
happen,
it's
uncomfortable.
So
if
you
have
a
certain
sense
in
advance,
I
will
not
do
X
because
Y.
Write
it
down
for
yourself.
And
you
don't
have
to
hand
everything
to
the
physician,
but
then
you
have
it.
Then
you
have
it.

SPEAKER_00
6:42

Right.

SPEAKER_02
6:43

So
I
would
start
there.
Now,
if
you're
going
to
a
new
primary
care
physician,
for
example,
again,
they're
very
short
on
time
too,
but
you
might
be
there
to
forge
a
bond
for
the
future.
So
again,
you're
not
gonna
get
everything
solved
in
that
first
appointment
where
you're
establishing
care.
You
will
almost
never
get
anything
solved
in
a
first
appointment
when
you're
establishing
care.
They
are
getting
a
full
history
and
getting
things
started.
So
you
as
the
patient
need
to
know
that
first
and
foremost.
But
then
secondarily,
again,
you're
gonna
have
that
list
of
priorities.
Do
not
exceed
three
priorities.
It
will
never
happen.
You
can
have
a
list
for
yourself.
It's
just
priorities,
priorities.
So
again,
I
focus
on
what
is
affecting
your
quality
of
life
most,
because
that's
how
we're
tuned
in
as
physicians
to
focus
on
that.
That
gets
us
most
scared
and
urgent,
if
you
will.
So
if
you're
establishing,
you
can
say
something
like,
I
am
here
to
have
someone
help
me
in
a
long-term
capacity.
I
know
we're
not
gonna
solve
everything
today.
Take
that
burden
of
fear
right
off
the
physician
by
saying
that
I
know
we're
not
gonna
solve
everything
today.
I
would
like
to
establish
care
so
that
I
have
someone
helping
me
out
because
I
have
a
lot
going
on.
I'm
worried
about
X,
Y,
Z.
It's
affecting
my
quality
of
life.
I'd
like
to
figure
out
how
to
work
together
to
make
that
better.
And
I'll
probably
need,
I
think
I
expect
to
need
some
referrals
if
that's
not
within
your
wheelhouse,
but
I'd
like,
yeah,
that's
what
I'm
that's
what
I'm
looking
for.

SPEAKER_00
8:00

But
those
conversations
are
nuanced
and
hard.

Neurodivergence And Hypermobility Connection

SPEAKER_00
8:03

Something
you
mentioned,
and
I
really
want
to
touch
on
this,
is
the
neurodivergent
aspect
of
this
because
I
had
no
idea
that
I
was
a
neurodivergent
for
a
very,
very
long
time.
It
actually
came
out
of
the
way.
How
do
you
like
my
collection
of
Rubik's
Cubes?
Right.
Anyways,
carry
on.
It
came
after
my
endometriosis
diagnosis,
which
I
there's
also
research
coming
out
that's
talking
about
the
the
delay
in
diagnosis
to
either
a
hypermobility
spectrum
disorder
or
endometriosis,
like
one
usually
begets
another.
Now,
that's
probably
a
generalization,
but
there's
a
prevalence
of
that
maybe.
I
had
no
idea
that
I
was
neurodivergent
for
a
very
long
time,
but
I
always
felt
crazy.
And
that's
one
of
the
things
that
I
noticed
in
myself.
Is
there
a
prevalence
of
people
that
have
EDS
or
HEDS
with
neurodivergent?
Absolutely.

SPEAKER_02
8:59

Yes.
So
the
the
more
the
more
we
look
into
it,
the
more
we
see
that
there
is
some
form
of
sorry
about
the
pun
connection.
I've
seen,
gosh,
I
gotta
double
check
the
numbers.
I've
I've
seen
numbers
that
are
like
40
to
50%
of
people
with
HEDS
and
HSD
have
some
form
of
neurodivergent
brain
that
is
significantly
higher
than
the
general
population.
But
also
that
people
who
have
both
a
neurodivergent
diagnosis
and
an
HSD
or
HEDS
diagnosis
have
a
significantly
higher
degree
of
disruption
from
their
physical
or
somatic
symptoms.
So
it's
like
two
to
three
times
more
problematic
for
those
individuals.
There's
there's
a
there's
a
in
both
directions
relationship.
Someone
with
H
EDS
or
HSD
is
more
affected
if
they
have
ASD,
and
someone
who
has
ASD
is
more
affected
if
they
have
HEDS
and
HSD.
And
I
really
hope
that
I'm
representing
that
data
correctly.
A
friend
and
colleague,
Jessica
Eccles,
is
the
bendy
brain,
and
I
adore
her.
Her
research
is
phenomenal.
I
encourage
anybody
just
to
look
at
that.
I
always
have
to
read
the
paper
three
times
because
it's
so
detailed.
But
everything
that
she's
putting
out
is
just
so
helpful
in
understanding
this.
And
it's
been
very
interesting
for
me
because
the
patients
who
come
to
me
historically
are
more
significantly
affected
than
average,
I
think,
because
otherwise
they
wouldn't.
I
was
so
the
clinic
that
I
was
in
previously
is
an
individual
pay
clinic.
It
does
not
take
insurance
up
front.
And
so
if
you're
someone
coming
to
us,
you're
coming
because
you
are
suffering.
Very,
very
few
people
come
to
us
initially
who
have
not
had
a
difficult
path,
just
the
way
it
is.
And
so
I
do
think
that
I
have
a
higher
proportion
of
people
who
are
neurodivergent,
but
I
was
not
expecting
that
when
I
first
started.
That
data
didn't
exist
yet
four
years
ago.
And
so,
but
I
did
start
seeing
like
there's
a
remarkable
number
of
people
who
really
need
questions
done
differently.
Okay.
And
I
was
one
of
one
of
my
least
favorite
parts
of
medical
training
for
myself.
Now,
to
be
clear,
I
do
not
have
a
neurodivergent
diagnosis.
I
do
have
significant
suspicions.
The
more
I
learn,
the
more
suspicious
I
become.
But
nevertheless,
medical
training
is
very
formulaic.
And
there's
an
expectation
of,
I
mentioned
before,
that
we
ask
questions
a
certain
way,
patients
are
supposed
to
come
in
and
say
it
this
way,
da
da
da
da.
Um,
that
is
not
how
my
brain
works.
And
so
I
was
frequently
criticized,
feedback,
uh,
for
allowing
the
conversation
to
go
where
it
went,
and
that
I
should
have
a
strict
script
so
that
I
didn't
forget
things
and,
you
know,
efficiency
and
da-da-da-da.
Um,
and
I
gotta
tell
you,
when
I
allow
the
patient
to
function
the
way
their
brain
is
functioning,
I
get
so
much
better
information.

SPEAKER_00
11:37

Yeah.

SPEAKER_02
11:38

If
I
stop
them
every
few
seconds
to
make
sure
that
my
questions
are
asked
and
answered
exactly
the
way
I
wrote
them
down
in
advance
because
someone
else
told
me
to
do
it
that
way,
I
almost
never
like
how
that
conversation
goes.
And
there
there
are
some
instances
where
someone
sits
down
and
I
can
tell
that
this
conversation
is
simply
going
to
be
scattered.
And
that
is
totally
okay.
Because
I
can
I
can
record
that
and
then
I
can
make
sense
of
it
later,
um,
you
know,
in
terms
of
writing
the
note
and
making
it
beautiful.

SPEAKER_00
12:03

Right.

SPEAKER_02
12:04

I
have
a
very
high
standard
for
my
notes.
But
it
is
never
going
to
work
for
some
brains
to
insist
that
it's
done
a
certain
way.
Never.
So
we
have
to
be
respectful
of
that,
is
the
point,
and
understand
what
we're
working
with.
And
you're
never
gonna
get
a
good
exam
or
a
good
history
if
you
have
not
made
an
environment
in
which
people
are
comfortable
either.

Trauma Informed Exams That Get Results

SPEAKER_02
12:24

So
I
always
have
a
collection
of
Rubik's
cubes
in
my
office.
So
the
cubes
actually
belong
to
my
husband,
but
we
had
an
we
had
overflow.
And
so
he
was
like,
Do
you
want
these?
It
sounds
like
your
patients
would
like
them.
Um
and
I
said,
Yes,
yes,
I
would.
And
my
patients
love
them.
So
it's
very
important
that
that
you
create
a
warm
and
welcoming
for
every
brain
situation.
Also,
by
the
way,
in
terms
of
a
physical
exam,
if
you
have
made
your
patient
uncomfortable
and
now
you're
trying
to
assess
their
joint
hypermobility
for
this
diagnosis,
I
want
everyone
listening
to
think
through
how
well
it
does
or
doesn't
work
if
someone
is
uncomfortable.
And
that
might
be
cold,
that
might
be
frightened,
that
might
be
pain
when
they
are
touched.
And
I
cannot
tell
you,
and
this
is
absolutely
heartbreaking,
I
cannot
tell
you
how
many
patients
will
say
to
me
that
I
am
the
first
physician
to
ask
before
I
touch
them.

SPEAKER_00
13:14

Yeah,
I
believe
it.

SPEAKER_02
13:16

I
believe
that.
And
by
the
way,
that
doesn't
mean
you
ask,
they're
gonna
say
no,
you're
not
gonna
get
your
physical
exam.
But
by
the
way,
if
a
teenager
says
no,
I
am
gonna
respect
that.
I
am
going
to
figure
out
a
way
around
that
because
there
might
be
trauma
we
haven't
discussed
yet.
So,
and
and
that's
different
at
every
age.
There
are
things
that
are
important
that,
you
know,
I
can't
let
a
three-year-old
who
can't,
you
know,
doesn't
want
their
ears
checked
to
not
get
their
ears
checked.
Context
matters,
obviously,
or
if
if
there's
an
emergency
situation.
So,
you
know,
take
that,
take
that
appropriately.
But
when
it
comes
to
a
teenager
on
my,
you
know,
on
my
schedule
who
has
been
frightened
by
physicians
before
and
and
may
have
other
trauma
that
they're
carrying,
the
first
thing
I
do
in
a
physical
exam
with
them
is
say,
all
right,
how
can
we
do
this
so
that
you
are
comfortable?
Are
you
ready?
Is
this
okay?
Do
you
want
me
to
let
you
know
what
I'm
gonna
do
first
so
that
you
are
aware
and
familiar?
And
at
every
stage,
most
of
the
time,
I'm
I'm
gonna
say,
all
right,
we're
gonna
do
this
next,
we're
gonna
do
that
next.
You
know,
and
a
lot
of
the
time
I'm
demonstrating
on
myself
so
that
there
is
an
anticipation
and
an
awareness.
But
it
is
so
heartbreaking
because
teenagers.

SPEAKER_00
14:22

And
we
all
want
that,
right?
We
all
want
the
power
to
say
yes
or
no
in
our
care
and
the
way
that
people
touch
us
or
the
way
that
we
are
approached,
right?
I
also
think
it's
huge
for
those
of
us
who
feel
pain
at
a
more
heightened
sensibility,
yes,
that
we
are
aware
of
what's
going
to
happen.
And
it
also
helps
us
organize
and
differentiate
between
what's
real
and
what's
not
sometimes.
Like
I
really
feel
like
that's
hard
for
me
as
someone
who
has
been
in
that
position,
and
I
didn't
put
these
pieces
together
until
recently,
honestly.
But
like
I
realized
that
I
was
so
much
more
heightened
in
my
pain
and
sensitivity
when
people
were
coming
right
at
me
and
I
was
already
in
this
like
fight
flight
freeze
mode,
you
know?
Like
I'm
I'm
heightened
to
all
of
that.
So
I
was
having
a-cause
this
is
not
gonna
get
me
a
good
exam.
No,
no,
and
and
that's
why
I'm
like,
I
really
appreciate
those
soft,
gentle
touches
and
warnings
because
it
helped
my
brain
organize
okay,
we're
gonna
do
this.
I'm
going
to,
you
know.
And
I
want
to
be
very
clear
because
that
is
a
real
phenomenon.

SPEAKER_02
15:36

Very
strongly
with
people
who
have
neurodivergent,
I'll
call
them
tendencies,
but
but
certainly
in
in
anybody
who
has
experienced
trauma
or
pain,
etc.
So
what
you're
describing
is
a
very
important
tool
that
any
physician
can
use
very
simply.
This
is
what
I'm
going
to
do.
Are
you
ready?
Right.
Yeah.
That
took
me
half
a
second.
Yeah.
100%.
Yeah.
But
what
you're
what
you're
describing
for
that
organization,
that
anticipation,
like
it
takes
the
barrier
of,
oh
God,
down.
That's
important.
And
we
know
that.
That
the
the
pain
pain
in
pathology
and
pain
psychology
knows
that
us,
like
that
is
a
real
aspect
in
heightening
the
experience
of
pain.
And
you're
right,
it's
gonna
give
me
bad
data
for
my
exam.
So
uh
one
of
the
things
that
I'll
often
do,
for
example,
so
Lyn
Linda
Bluestein
mentioned
this
on
a
podcast
of
hers
that
she
will
usually,
and
I
often,
but
not
always,
uh,
will
have
the
patient
do
the
physical
maneuvers
themselves
with
me
supervising
and
I'm
like
walking
them
through
so
I
know
it's
in
the
right
orientation
and
things
like
that.
But
if
they're
doing
it
on
themselves,
one,
they're
not
gonna
resist
themselves
as
strongly
as
they
might
resist
me.
So
I'm
gonna
get
those
pinkies
way
further
if
they're
doing
it
themselves.
And
like,
yeah,
we're
supposed
to
do
it
with
moderate
pressure
or
whatever.
But
also
I
promise
you
that
my
husband,
who
is
not
at
all
hypermobile,
he
can
press
on
himself
as
far
as
he
wants.
It's
not
going
there.
So,
what
does
moderate
pressure
really
like
add
to
the
conversation,
you
know?
But
if
if
for
whatever
reason
I
have
to
be
doing
the
touching,
one
of
the
things
I'll
often
have
them
do
is
I'll
say,
put
your
hand
on
top
of
mine.
Because
you
can't
tickle
yourself.
Put
your
hand
on
top
of
mine.
And
now
you
are
part
of
the
process
of
where
the
exam
is
happening.
What
you
are
experiencing
is
is
part
of
your
own
processing
as
opposed
to
it
coming
at
you.
That
took
me
no
time.
Put
your
hand
on
mine.

SPEAKER_00
17:18

I
think
everyone
needs
this,
not
just
in
a
pediatric
clinic.
Why
can't
we
just
be
nice
to
each
other?

SPEAKER_02
17:24

And
I'm
just
like,
But
also
that
will
take
less
time
than
causing
someone
stress
and
having
to
stop.

SPEAKER_00
17:31

Like,
like,
I'm
not
gonna
grow
out
of
my
neurodivergence.
I'm
sorry.
Like,
I
know
how
to
manage
it
better
now
because
of
how
however
like
there
are
moments
where
you
need
to
feel
safe
in
an
environment
that
sometimes
you
don't
feel
safe
in.

SPEAKER_02
17:48

Absolutely.

SPEAKER_00
17:49

Absolutely.
It's
little
things
that
can
help
a
patient
do
that,
but
when
you're
working
with
developing
minds,
the
developing
frontal
cortex,
you
have
to
be
even
more
mindful
of
this.
And
I
think
as
parents,
like
this
is
helping
me
identify
areas
that
I
can
really
help
support
my
kids.
Yeah.
And
also
as
a
parent,
talk
to
a
provider
about
maybe
some
expectations
in
a
good
way,
and
in
an
and
not
in
like
a
you
know,
like
defensive
way,
but
say,
hey,
we
really
appreciate
when
X,
Y,
and
Z
is
done
like
this.
It
just
helps
her
or
helps
in.
Yeah.

SPEAKER_02
18:26

Yeah.
Absolutely.
Not
always,
but
but
usually
if
if
I
see
on
the
history
that
someone
has
an
ASD,
an
autism
spectrum
disorder
diagnosis.
And
I
think
a
lot
of
people
are
just
saying,
just
call
it
autism.
So
whatever.
Phrases
aside,
if
someone
is
coming
in
with
that
historical
diagnosis,
I
will
almost
always
say,
How
do
you
want
this
conversation
to
go?
What's
going
to
work
for
you?
A
lot
of
the
time,
I
am
told
and
happy
to
talk
more
to
the
parent
up
front
so
that
they
can
get
used
to
what
my
style
is,
instead
of
insisting
that
you're
15,
your
parent
shouldn't
be
talking
for
you.
Because
this
is,
again,
I'm
very
scary.
I'm
very,
very
scary.
But
literally,
truly,
new
new
environments
like
that
are
deeply
terrifying.
And
and
new
processing
is
hard.
So
you
also
need
to
know
that
you
are
safe
in
my
office
to
stim,
to,
you
know,
have
your
fidget
toy,
to
do
whatever
it
is
that
helps
to
calm
your
nervous
system.
Half
the
time
I've
got
a
cube
myself.
So
it's
it's
very,
very
I
can't
tell
you
how
often
I
will
see
a
patient
come
in
knowing
that
they're
supposed
to
sort
of
sit
quietly,
culturally,
act
a
certain
way
or
whatever,
and
they
can't
get
the
words
out
until
they
realize
that
this
is
a
place
where
I'm
not
gonna
judge
them.
I'm
not
gonna
stop
them.
By
all
means,
pick
a
cube
for
the
day.
And
uh,
and
then
once
they
are
allowing
their
body
to
do
what
it
needs
to
do
to
sort
of,
I
think
of
it
as
a
pop-off
valve
of
stress
and
and
twitchiness
and
whatever,
then
they
can
start
telling
me
their
their
own
details,
but
not
until
they're
comfortable,
not
until
they've
got
that
part
engaged.
And
again,
that
takes
no
effort
from
me.
None.
Zero.
Right.

School Support And 504 Basics

SPEAKER_00
19:54

You
know,
we
talk
about
the
support
in
the
doctor's
office
and
how
to
approach
it
there.
But
I
think
something
that
many
of
us
as
parents
and,
you
know,
people
that
have
walked
through
this
that
we
struggle
with
is
how
do
we
help
our
kids
when
they
are
hypermobile
and
they
need
help
and
support
in
school?
And
this
applies
to
those
with
endometriosis,
hypermobility
spectrum
disorders
of
any
range.
And
especially
for
those
that
are
on
the
autism
spectrum,
ADHD
or
or
whatever
the
case
is,
like,
how
do
we
support
them
in
their
growing
and
learning
environment?
What
are
some
practical
tools
that
we
can,
as
parents
and
teachers
or
educators,
do
for
these
students?
I
love
this
subject.

SPEAKER_02
20:37

It's
so
important.
So
we're
gonna
begin.
So,
first
and
foremost,
I
think
one
of
the
main
things
to
recognize
is
that
the
process
of
obtaining
accommodations
can
actually
be
so
helpful
for
learning
how
and
when
to
uh
uh
to
voice
your
own
needs
and
and
uh
and
advocate
for
yourself
through
the
process
of
obtaining
accommodations.
Uh
because
the
the
goal
and
the
experience
is
often
that
you
then
learn
that
you're
allowed
to
take
up
space.
You're
allowed
to
have
your
individual
needs
met.
Now,
oftentimes,
unfortunately,
because
resources
are
scarce
and
there's
a
lot
of
misunderstanding,
too
frequently
people
end
up
having
to
fight
for
their
accommodations.
And
that's
that's
a
that's
the
bad
lesson.
But
then
you
learn
to
be
able
to
do
it
because
you
might
need
to
be
able
to
do
it
in
the
future.
So
it's
still
a
good
skill
to
have.
But
one
of
the
things
that
if
if
you
all
learn
one
thing
for
me
today,
accommodations,
getting
an
accommodation
in
a
public
school
setting,
you
do
not
need
to
have
a
formal
diagnosis
of
anything
in
order
to
qualify
for
an
accommodation.
So
if
we're
talking
about
a
504
plan
specifically,
this
is
these
are
plans
that
have
to
do
with
addressing
medical
uh
issues
or
symptoms
that
arise
uh
that
are
chronic.
So
it
has
to,
it's
not
like
a
broken
leg
that's
gonna
go
away.
This
is
something
expected
to
hang
around,
um,
which
is,
by
the
way,
distinct
from
an
IEP
plan
that
has
to
do
with
adjusting.
Adjusting
educational
goals
and
outcomes
based
on
what
an
individual
might
need.
And
there
is
absolutely
overlap
between
the
two,
which
confuses
everybody.
But
the
504
plan
is
usually
where
my,
you
know,
purview
is.
Because
we're
talking
about
things
that
affect
mobility,
getting
up
and
back
to
class,
classrooms
being
difficult
on
the
physical
functioning
of
your
body,
cold
air
in
the
classroom,
hot
air
in
the
classroom,
allergies
in
the
classroom,
that
all
is
under
the
umbrella
of
a
504
plan.
But
also
so
is
extended
test
time,
which
is
what
we
hear
about
more.
But
the
most
important
point
I
absolutely
must
make
is
that
if
you
have
chronic
symptoms
that
are
disrupting
an
element
of
daily
functionality,
you
are
entitled
to
a
504
plan
or
at
least
getting
evaluated
for
a
504
plan.
You
do
not
need
a
formal
diagnosis.
You
need
symptoms.
And
unfortunately,
a
lot
of
schools,
I
think
with
the
best
of
intentions,
I
hope,
but
a
lot
of
the
time
that
understanding
is
missed.
And
so
schools
insist
on
having
a
physician
who
has
finalized
the
diagnosis
before
they're
willing
to
give
a
full
evaluation
for
a
504
plan.
That
is
not
how
the
law
works.
I
am
not
a
legal
expert,
so
I
should
be
careful
how
I
say
that,
but
that
I
know.
And
so
what
people
need
to
understand
is
that
if
your
child
is
struggling,
and
I'd
love
it
if
accommodations
were
in
place
before
a
child
struggles,
that
is
a
long-term
goal.
But
if
you're
seeing
that
your
child
is
struggling
because
of
physical
symptoms
or
even
emotional
symptoms,
whatever
it
is,
you
can
and
should
have
an
evaluation
for
whether
accommodations
are
appropriate
and
what
those
might
be.
Now,
you
can
look
online,
I'll
I'll
be
able
to
post
them
on
my
own
website
shortly,
but
you
can
look
online
for
uh
uh
504
plan
like
templates.

SPEAKER_00
23:43

Okay.

SPEAKER_02
23:43

And
you
know,
step-by-step
instructions
on
how
to
get
one,
what
to
ask
the
school
for.
But
basically,
if
you
go
into
the
school
with
a
letter
that
says,
I
have
these
concerns
about
these
symptoms
that
my
child
is
experiencing,
you
don't
need
a
diagnosis.
You
just
send
them
that
letter,
you
get
it
signed
and
dated,
and
they
are
required
by
law
to
evaluate.
Now,
it
might
not
land
the
way
you
want
it
to
land,
but
that's
how
you
start
the
process.
And
it
is
so
important
to
know
that
and
so
important
to
be
able
to
get
those
resources
moving
and
grooving.
I
can't
emphasize
it
enough.

Accommodation Starter Pack That Helps

SPEAKER_00
24:14

Yeah.
What
are
some
of
those
accommodations
that
maybe
we
should
consider
for
our
kids?

SPEAKER_02
24:20

So
it's
again,
person
by
person,
what
I
like
to
call
my
starter
pack
usually
has
more
to
do
with
the
physical
aspect
of
things.
So,
for
example,
most
of
my
kids
I'll
give
um
extended
time
between
classes
so
that
they're
not
in
trouble
if
they're
late
or
you
know,
they
might
have
the
option
to
leave
five
minutes
early
or
arrive
five
minutes
late,
so
that
they
don't
have
to
go
bolting
through
a
crowded
hallway,
classrooms
over
here
or
over
there
that
can
be
very
wearing
on
the
body
over
time.
Access
to
an
elevator
for
the
same
reason.
Um,
and
it's
not
like
you
have
to
use
these
all
the
time.
Most
of
the
time,
I'm
saying
this
should
be
in
your
back
pocket
if
you're
having
a
hard
day,
for
example.
Let's
see,
sometimes
I
can
get
classrooms
moved
if
we
do
things
in
advance.
So
instead
of
the
classroom,
you
know,
way
up
on
all
the
stairs
over
there,
you
have
classrooms
that
are
set
up
down
here.
Depends
on
the
situation,
obviously.
Extended
test
time
is
usually
not
that
hard
to
get,
especially
if
it's
combined
with
other
conditions
as
well.
It's
sometimes
counterproductive,
but
that's
that
can
be
a
conversation
for
another
day.
So
extended
test
time,
the
option
to
use
things
like
I'll
show
you
splints
in
class,
for
example,
that
might
help
with
writing
more
comfortably.
So
if
you
put,
you
know,
an
appropriate
splint
on
in
class,
it
might
look
like
you're
fiddling
with
things.
But
if
you
have
permission
to
pause
and
rest
your
fingers,
take
a
break,
take
a
snack,
things
like
that.
Oftentimes
I'll
get
pushback
by
by
you
know
the
uh
teachers
and
and
administrators
because
they
they
look
at
it
as
taking
away
from
classroom
time.
I
look
at
it
as
building
scaffolding
so
that
we
actually
can
put
back
in
more
classroom
time.

SPEAKER_01
25:52

Right.

SPEAKER_02
25:52

Because
if
I
I
have
a
kid
who's
pushing
too
hard
in
the
first,
say,
half
of
the
school
day
and
then
they
crash
because
they
pushed
and
pushed
and
pushed,
versus
if
I
put
into
play
things
like,
like
I
said,
you
don't
have
to
rush
between
classes,
you
can
take
a
little
break
in
the
middle
of
the
day.
Things
like
that.
Now
we're
storing
energy
up
for
later
so
that
we
are
not
crashing
every
single
day.
We're
not
creating
a
downward
cycle
of
not
being
able
to
attend
school
at
all,
for
example.
That's
a
big
issue
with
my
kids.
Um,
so
starting,
starting
there,
starting
there.
Anything
that
we
can
do
to
offset.
And
and
my
biggest,
my
biggest
thing
is
always
we
gotta
remember
what
the
priority
is.
Is
the
priority
teaching
the
kid
that
you
have
to
be
identical
to
everybody
else
to
get
through
your
day
or
else?
Or
is
the
priority
getting
the
most
out
of
your
education?
That's
a
great
way
to
put
that.
And
then
I
usually
sit
there
on
the
phone
and
wait
for
someone
to
answer
the
question.
Right.
Right.
What's
our
what's
our
goal?
Yeah.
Yeah.
Yeah,
exactly.
And
again,
credit
to
schools,
just
to
be
clear,
I
I
I
think
that
that
the
highest
thing
that
a
person
can
do
is
teach
children,
um,
and
that
the
school
system
is
is
direly
in
need
of
of
better
funding
and
and
uh
you
know
better
just
assistance.
So
in
the
same
way
that
I
can't
100%
blame
colleagues
when
when
their
system
is
against
them,
I
also
can't
hundred
percent
blame
schools.
However,
you
do
have
a
moral
and
ethical
and
probably
legal
obligation
to
know
what
the
laws
are
so
that
you're
not
leaving
kids
without
assistance
inappropriately.

SPEAKER_00
27:27

Yeah.

SPEAKER_02
27:28

And
I
will
shout
that
loudly.

SPEAKER_00
27:30

I
think
and
it's
true
because
like
I
even
think
of
like
PE
classes.
There
are
some
things
that
I
growing
up
was
forced
to
do
that
I
physically
it
like
hurt
me
to
do,
and
not
in
a
good
way,
not
because
I
was
out
of
shape,
which
it
was
always
in
reality.
You're
not
having
muscle
strain
after
a
good
workout,
different
experience.
Yeah,
yeah.
Had
I
known,
I
think
I
probably
would
have
been
saved
a
lot
of
pain
and
trauma
to
my
joints
and
and
and
body.
But
then
I'm
like
thinking
of
it,
even
in
from
my
daughter's
perspective,
she
has
a
brand
new
school,
brand
new
this
year.
They
just
built
it,
she's
the
first
class
in
it,
and
guess
what?
They
don't
have
lockers.
I
weighed
her
backpack.
I
weighed
her
backpack,
it
was
20
pounds.

SPEAKER_02
28:11

Why
would
you
wear
why
would
you
create
a
new
school
that
has
no
lockers?
I
can't
even
I
mean,
I
think
it's
a
safety
concern,
honestly,
in
this
day
and
age
of
it
but
good
grief.
But
now
it
gives
everyone
clear
lockers,
clear
plastic
lockers,
boom,
problem
solved.

SPEAKER_00
28:26

There
we
go.
And
you
know,
and
as
so
I'm
I'm
gonna
give
this
a
little
little
bit
away
because
you
know
I
don't
disclose
a
lot
of
my
kids
health
things,
but
she
wouldn't
mind
if
I
said
this.
So
she
has
the
starting
of
scoliosis.
And
so
these
are
the
accommodations
that
as
someone
who
has
scoliosis
are
the
backpack.
The
backpack.

SPEAKER_02
28:45

And
she's
like,
my
back
really
hurts.
I
have
this
weird
issue
right
now
where
when
I
was
growing
up,
I
hate
saying
that,
I'm
getting
old
here,
that
we
had
textbooks,
and
now
the
problem
in
the
backpack
is
the
darn
laptops.
So
I
can't
have
them
leave
the
laptop
in
each
individual
classroom.
My
accommodation
was
that
I
had
a
second
set
of
a
book
in
the
classroom,
so
I
didn't
have
to
hold
the
AP
bio
book
in
my
back
every
day.
And
sometimes
you
still
have
the
textbooks
in
the
classroom,
and
I
can
make
that
accommodation
happen
like
that.
But
I
can't
I
can't
figure
out
a
way
to
get
the
laptop
to
not
be
heavy.

SPEAKER_00
29:20

It's
incredible.
And
it's
even
beyond
that,
like
you
know,
so
one
of
the
things
that
I
always
prepare
my
kids,
because
I
have
two
girls,
is
I
always
prepare
period
packs
for
them
so
that
if
something
were
to
come
up,
if
they
were
to
start
their
cycle
or
whatever
the
case
is,
we've
always
practiced
this
as
someone
who
that's
where
I
that's
where
I
stay
in
space,
is
as
I
practice
those
types
of
things.
But
then
I'm
like,
you
have
to
have
two
packs
of
markers,
three
packs
of
this,
you
know,
notebooks.
And
so
I've
always,
you
know,
that's
one
of
the
things
that
I've
gone
to
the
school
with
is
like,
can
we
accommodate
her
being
five
minutes
late
after
lunch
to
go
to
get
the
second
half
of
the
day
materials?

SPEAKER_02
30:05

A
completely
reasonable
request,
absolutely.
Yeah.

SPEAKER_00
30:08

Yeah.
But
I'm
just
it
just
blows
my
mind
that
you
know
we
have
to
make
those
accommodations.

SPEAKER_02
30:14

Yeah,
it
it's
it's
I
mean,
again,
empathy
in
this
regard.
It's
it's
wild
that
we
have
come
gone
so
far
on
the
pendulum
towards
safety,
safety,
safety,
safety,
safety
that
we
forget
about
genuine
medical
and
and
health
needs.
So
that
conversation
is
is
longer
for
another
day.
But
one
of
one
of
the
things
that
I've
started
recommending
actually
to
um
uh
to
people
who
might
be
getting
their
period
unexpectedly
is
thank
goodness
there
is
this
trend
of
period
panties.

unknown
30:43

Yes.

SPEAKER_02
30:44

Just
just
wear
those.
Just
wear
those
all
the
time.
They're
they
are
apparently
now
cute
and
comfortable.
So,
you
know,
if
if
you
just
wear
those,
you're
not
gonna
get
the
surprises
that
that
we
all
had
to
be
traumatized
by
as
children.
Um,
you
know,
surprise,
white
pants.
Um
why
do
we
need
that
as
a
milestone
in
life,
really?
Right.
So
to
that
I
say
if
you're
wearing
something
regularly
that
is
both
comfortable
and
practical,
you
can
decrease
the
need
for
carrying
extra
supplies,
for
example.
Not
everyone
is
gonna
be
comfortable,
especially
with
neurodivergence,
you
might
not
be
comfortable
with
either
the
fabric
itself
or
the
experience
of
the
fabric
absorbing.
Everyone's
gonna
be
a
little
different
on
those,
but
there
are
also
a
million
different
items
and
products
available
to
make
that
lived
experience
better
as
well.
So
we've
got
different
options.
Yeah.

SPEAKER_00
31:32

Yeah.
And
one
of
the
things
that
I
am
working
on
is
with
my
kids
having
AIDS.
So,
like,
I
am
not
sponsored
by
this
at
all.
If
they
want
to,
great,
but
the
jelly
bend
is
a
really
good
option.
And
I
personally
use
them
to
help
strengthen
or
like
to
help
support
my
core
more
instead
of
being
so
tired
all
the
time.
And
having
that
for
my
daughter
is
another
thing
that
I've
worked
with
having
in
the
nurse's
office.
So
she
doesn't
have
to
carry
it,
but
she
can
go
and
use
it
if
she
needs
to.
That
type
of
thing.
I
love
that.
Those
types
of
modalities
are
really
helpful
for
her.
Um,
and
I
don't
know
if
I'm
doing
it
right
all
the
time,
but
it's
just
what
you
know,
the
things
that
I've
learned,
I'm
trying
to
impart.
Right,
right.

SPEAKER_02
32:13

As
you
should,
as
you
should.
And
also,
usually
that's
like
my
job,
you
know,
to
figure
out
what's
necessary.
And
it
shouldn't
have
to
be
your
job,
but
it
sounds
like
you're
doing
great.
Well,
thank
you.
But
nevertheless,
I
so
a
lot
of
my
patients
have
been
very
happy
with
products
like
Jelly
Bend.
I
haven't
tried
that
one
specifically,
but
I
am
almost
always
wearing
um
compression
socks
and
compression
shorts.
Um,
one
of
these
days
I'll
actually
buy
myself
compression
like
leggings
so
that
it's
one
product,
but
I
just
haven't
gotten
around
to
it.
One
of
one
of
my
weird
tricks,
if
anybody
finds
this
useful,
is
that
I
have
pretty
significant
sacroiliac
instability.
So
the
joint
in
like
in
my
tailbone
area
and
it
causes
significant
lower
back
pain.
But
now
I
mostly
couldn't
care
less
because
I'm
almost
40
and
I
just
I'm
just
over
this
phase
of
my
life.
But
sometimes
I
want
to
feel
cute
in
the
way
that
I
choose
and
don't
want
my
what's
called
an
SI
belt
on
the
outside
of
my
clothes.
It's
not
the
look
I'm
going
for.

unknown
33:04

Right.

SPEAKER_02
33:04

So
my
hack,
if
you
will,
is
that
since
I'm
almost
always
wearing
those
compression
swords
underneath,
I
layer,
I've
got
my
I've
got
my
undergarments,
I've
got
my
compression
shorts,
then
I
put
the
SI
belt
over
the
compression
shorts,
and
then
I
put
my
pants
on.
Yeah.
It's
a
lot.
And
because
you
folks
are
not
living
through
the
era
of
skinny
jeans
when
you
are
a
teenager
or
college
student,
which
should
never
happen
again,
um,
the
current
trend
is
much
more
forgiving
and
reasonable
to
human
figures.
And
so
one
could
fairly
easily
wear,
because
even
if
you
don't
care
about
what
it
looks
like,
it's
it's
okay
to
not
want
people
to
question
what
you're
wearing
all
the
time.
People
are
inappropriate
that
way.
So
if
you're
17
and
wearing
a
thing
that
is
medical,
people
ask.
And
it's
not
fair
that
you
should
have
that
extra
burden.
So
I
have
no
problem
helping
people
hide
stuff
because
you
just
don't
want
the
questions,
but
I
also
don't
want
to
give
the
message
that
you
should
be
or
have
to,
you
know,
feel
that
way.
I
just
could
not
care
less
what
I'm
wearing.
But
wearing
it
under
that,
much
more
comfortable.

unknown
34:04

Yeah.

SPEAKER_02
34:04

Not
easy
to
go
pee.
Gotta
be
honest
with
that.
It's
a
lot
to
take
off.
That's
a
problem
if
you're
having
all
the
water
all
day
long.
So
I
can't
solve
everything.
I'm
so
sorry.

SPEAKER_01
34:13

But
it's
so
true.

SPEAKER_02
34:14

Yeah,
it's
so
true.
I'm
right
there
with
you.
I
feel
like
we
are
in
a
good
space
together.

Real Life Plans For Busy Brains

SPEAKER_02
34:20

But
like
one
of
the
things
that
I
love
most
is
actually
having
like
a
brainstorming
session
with
whoever
it
is
sitting
with
me,
because
again,
in
medicine,
we're
often
taught
like,
here's
your
gold
standard,
it's
all
or
nothing.
And
that
just
doesn't
work
with
life.
And
my
goal
is
if
I
can
get
you
to
do
something
that
is
better
than
doing
nothing,
and
I
want
you
to
be
able
to
level
with
me
about
what
options
exist.
And
I'll
still,
like,
you
know,
in
in
um
in
eczema
care,
the
first
thing
we
learn
as
as
pediatric
residents
is
like,
what
type
of
moisturizer
is
going
to
work
best?
And
we
have
this
whole
spectrum
of
like
oil
is
not
as
good
as
lotion,
is
not
as
good
as
cream,
is
not
as
good
as
ointment,
and
we
all
memorize
it.
And
for
whatever
reason,
in
most
things
in
medicine,
we
don't
have
that
degree,
like
like
degrees
of
you
know,
hierarchy
defined.
And
everything
else
just
feels
like
either
you're
doing
the
right
thing
that
the
doctor
told
you
to
do
or
nothing.
And
it's
like,
well,
that's
silly.
You're
gonna
get
a
lot
of
bad
care
that
way.
So,
so
for
me,
what
I
like
to
do
is
try
to
figure
out
what
the
barriers
are
for
you
as
an
individual
and
say,
all
right,
well,
here's
what's
going
on
in
your
life
right
now.
That
thing
that
I'd
love
you
to
do,
not
gonna
happen.
It's
not
gonna
happen.
Let's
start
with
what
seems
more
reasonable.
If
I
want
a
busy
teenager
with
ADHD
to
take
a
medication
three
times
a
day,
not
gonna
happen.
And
you
know
what
else
is
not
gonna
happen?
Drinking
water
all
day
long
is
not
gonna
happen.
It's
not.
Unless
you
have
one
of
those
water
bottles
that
lights
up
and
alerts
your
phone
every
10
minutes
if
you
haven't
had
a
sip,
which
by
the
way,
highly
recommend,
it's
not
gonna
happen.

SPEAKER_00
35:47

Right.

SPEAKER_02
35:48

Now,
you're
also
then
never
gonna
feel
adequately
better
with
pots
if
you
don't
do
the
water.
But
I'm
much
more
aggressive
getting
someone
started
on
a
medication
that's
maybe
once
or
twice
a
day
if
I
know
they're
gonna
struggle
with
their
water
intake.
And
that
sounds
backwards
because
I
still
want
the
water
intake,
but
I'm
also
not
gonna
sit
there
and
say,
until
you
drink
the
water,
I'm
not
gonna
medicate
you.

unknown
36:08

Right.

SPEAKER_02
36:09

I
want
you
to
function.
I
want
you
to
feel
better.
I
want
you
to
feel
like
a
person
who
can
do
their
stuff
at
school
and
thrive
as
best
as
you
can,
get
to
meet
your
goals.
And
I
gotta
tell
you,
if
you
feel
a
little
better
overall,
you
are
a
lot
more
likely
to
drink
the
darn
water
because
it's
not
like,
oh
God,
one
more
thing
that
I
have
to
do.
It's
a
whole
different
experience.
Yes.
So
my
approach
is
flavorful.
Yeah.

SPEAKER_00
36:32

I
love
that
because
I
think
there's
so
many
times
that
as
patients,
we
leave
the
doctor's
office
with
the
to-do
list
and
it's
so
overwhelming,
especially
if
you
have
ADHD
and
you
are
just
like
barely
functioning
half
the
time.
And
if
you're
like
me
and
you're
in
surgical
menopause,
it's
even
more
fun,
let
me
tell
you.
So
there's
a
biestrogen.
Let's
try
to
function
without
you,
yeah.
Right.
Yeah.
Like
be
half
a
human.
But
these
are
the
things
that
like
I
think
are
so
imperative
to
just
quality
of
life.
Like,
let's
treat
people
the
way
that
we
would
want
to
be
treated
with
quality
of
life,
you
know?
And
so
that's
key.

Pain Management Without Shame

SPEAKER_00
37:06

For
these
students,
though,
like,
how
do
you
and
this
might
be
not
the
best
question,
but
for
those
that
are
in
pain
often,
I
was
always
taking
insides.
It
did
a
number
on
my
kidneys
and
everything
else.
Are
there
ways
that
you
can
you
approach
pain
with
students?
Yes,
yes,
okay.

SPEAKER_02
37:24

So,
first
of
all,
we
gotta
not
demonize
it.
Pain
is
present
to
tell
you
that
something
is
in
your
body
that
shouldn't
be
happening
that
way,
but
pain
signals
can
get
stuck
in
the
on
position.
There's
a
lot
of
discussion
around
that
subject
as
its
own
pathology,
and
that
falls
under
like
um
central
sensitization
pain
syndromes.
And
while
I
don't
like
to
overdiagnose
those
because
I'm
not
a
pain
specialist,
it
is
informational
to
understand
how
much
that
type
of
system
can
ramp
up
what
your
current
experience
is.
And
we
need
to
make
sure
that
we're
kind
of
letting
that
off.
Again,
I
mentioned
earlier
having
that
additional
layered
burden.
I'm
always
describing
it
as
like
if
you
have
a
tangled
chain
of
necklaces,
you
can't
just
gank.
It's
not
gonna
happen.
You
gotta
go
slowly
over
here,
slowly
over
there,
and
eventually
you'll
get
them
all
out.
So
I
never
want
someone
leaving
my
office
thinking,
boom,
we're
gonna
fix
it
all
today.
It's
inappropriate
for
me
to
say.
But
if
if
we've
gotten
a
good
overview
and
we
can
say,
okay,
this
is
clearly
where,
you
know,
what
needs
to
happen,
we'll
get
a
lot
further.
So
in
terms
of
pain
itself,
we
gotta
not
demonize
it.
Mindfulness
meditation
is
about
that
often,
by
the
way.
It
gets
sort
of
a
bad
rap
in
in
chronic
illnesses
and
chronic
pain
because
it's
like,
oh,
just
think
it
away.
No.
What
I'm
asking,
if
I'm
asking
you
to
do
mindfulness
meditation,
which
by
the
way,
I
absolutely
do,
what
I'm
asking
is
for
you
to
relearn
how
to
interpret
pain.

SPEAKER_00
38:43

Yeah.

SPEAKER_02
38:44

If
you
know
that
the
experience
of
pain
is
giving
you
information
about
your
body,
but
pain
is
not
bad,
right?
Different,
it's
just
a
different
processing.
You
remove
the
power
of
the
emotional
distress
that
goes
with
it.
Because
we
know
that
distress
makes
it
worse.
And
that's
not
diminishing
the
experience
of
it,
that's
validating
the
experience
of
it.
But
I'm
very
careful,
I
try
to
be
very
careful
with
my
words
in
that
regard.
So
that's
that's
step
number
one.
Um
it's
an
ongoing
step.

SPEAKER_00
39:11

Right.

SPEAKER_02
39:11

I
gotta
assess
if
the
medication
you've
been
on
is
appropriate.
I
don't
necessarily
do
that
the
first
day
I've
met
someone.
I
kind
of
want
to
get
the
lay
of
the
land
first.
Um,
but
pain,
pain
medicine
for
teenagers
is
often
sort
of
overlooked
that
you
should
just
be
able
to
push
through,
and
I
think
that's
unkind.
Yeah.
For
reasons
I
can't
explain,
almost
none
of
my
patients
get
adequate
relief
from
a
non-steroidal
anti-inflammatory.
So
that
includes
your
ibuprofen
and
your
relief.
Sometimes
they'll
get
a
little
more
relief
with
something
that's
a
little
longer
acting
like
maloxicam.
I'm
always
okay
trying
that
first
because
it's
pretty
low
risk
for
like
a
decent
period
of
time.
I
wouldn't
have
someone
on
it
forever,
but
it's
it's
a
good,
solid
starting
place.
And
if
it
does
well,
it
gives
me
information.
If
it
does
poorly,
it
gives
me
information.
So
I
check
in,
I
don't
let
someone
just
linger
on
something
for
more
than
like
four
to
six
weeks.
I
check
in
frequently.
Do
not
be
stingy
with
things
like
gabapentin,
lyrica.
I
there's
hit
or
miss
with
the
SSRI
department.
So
things
that
are
traditionally
used
as
antidepressants
absolutely
have
benefit
for
the
brain
chemistry
to
make
pain
better.
But
I
do
find
this
is
anecdotal,
so
you
know,
data
absolutely
needs
to
be
collected
on
this.
I
find
that
those
can
be
helped
when
there's
significant
distress
making
the
pain
significantly
worse.
I
don't
find
that
they're
super
helpful
with
long-term
straight-up
pain
management.
I
do
see
a
fair
amount
of
side
effects.
And
with
SNRIs,
there's
a
possible
risk,
depending
on
who
you
ask,
of
worsening
dysautonomia.
That
is
a
very,
very
general
statement.
So
please
be
specific
with
your
physician.
Please
do
not
stop
an
SNRI
for
that
concern
right
away.
If
anyone
is
listening,
do
not
stop
an
antidepressant
immediately.
Those
need
tapering
and
physician
oversight.
Thank
you
very
much.
Anyways,
um
making
that
clear.
Yeah.
But
um,
but
the
oftentimes
I
need
them
sort
of
in
a
combination.
So
you
gotta
you
gotta
be
creative.
Low
dose
naltrexone
has
gotten
very
popular.
I
think
it's
a
phenomenal
medication.

SPEAKER_00
41:06

Love
it.

SPEAKER_02
41:07

Obviously,
everyone's
a
little
bit
different,
but
I
will
use
that
down
to
around
age
12.
I
think
that's
sort
of
the
lowest
of
anyone
I've
ever
heard
of
using
it.
Okay.
Data
very,
very
limited,
but
uh,
but
we're
talking
very
low
doses,
by
the
way.
So
generally
speaking,
I
feel
pretty
okay
trying
that.
Everyone's
everyone's
different,
but
now
we
can't
leave
out
the
physical
aspect.
If
someone
never
does
anything
physical
with
their
body,
I
want
to
be
super
clear.
These
conditions
are
not
caused
by
deconditioning,
but
they
are
absolutely
worsened
by
dis
deconditioning.

unknown
41:40

Yeah.

SPEAKER_02
41:41

You
cannot
decondition
yourself
into
a
connective
tissue
disorder.
That
is
not
how
it
works.
And
again,
repeat
that
for
anyone
who
needs
me
to
repeat
it.
But
I
do
need
to
figure
out
how
to
help
someone
move
in
a
way
that
supports
and
helps
their
body
feel
better.
That
might
be
ridiculously
slow
by
standard
comparisons.
Your
pain
levels
will
not
improve
if
you
are
not
able
to
do
some
movement.
They
won't.
Highly
individualized,
very
careful,
very
slow
most
of
the
time.
But
we
talk
about
it.
We
talk
about
the
lived
experience
of
the
pain.
And
I
think
honestly,
one
of
the
things
that's
most
powerful
about
being
in
my
office
is
that
they
know
that
they're
talking
to
someone
who
knows
what
it's
like.

unknown
42:21

Yeah.

SPEAKER_02
42:22

And
I
don't
want
to
call
that
a
magic
power
or
anything
like
that.
And
I
don't
want
to
say
that
a
physician
who
hasn't
had
the
lived
experience
can't
do
a
phenomenal
job
because
they
can.
I
have,
I
have
colleagues
without
the
lived
experience
that
I
think
the
world
of.
Um,
but
at
the
same
time,
if
they're
worried
about
can
I
still
be,
you
know,
can
I
still
meet
my
goal?
Can
I
still
meet
my
dream
if
I'm
having
this
much
trouble
going
to
school?
And
they
come
in
and
ask
me
about
that,
then
the
first
thing
I'm
gonna
tell
them
is
that
I
missed
almost
my
entire
year
of
senior,
you
know,
senior
year
of
high
school.
I
was
out
for
almost
all
of
it.
Um
now,
you
know,
with
current
criteria,
we
would
have
diagnosed
severe
myalgic
encephalomyelitis
slash
chronic
fatigue
syndrome,
but
that
diagnosis
didn't
exist
yet.
So
I
was
instead
told
that
I
was
depressed
and
grieving
my
parent
too
strongly,
inappropriately,
and
I
should
just
suck
it
up.
So
I
I
have
feelings
about
that.
But
nevertheless,
the
the
lived
experience
of
it
is
very
significant
because
then
they
can
say,
oh
my,
wait
a
minute,
you're
a
doctor.
Whoa!
So
it
opens
up
the
entire
conversation
of
not
just
if
I
can
meet
the
goals
for
for
that
individual.
It's
how?
How
are
we
gonna
meet
those
goals?
It's
not
gonna
look
the
same
as
somebody
sitting
next
to
you,
almost
almost
definitely
won't
look
identical.
And
it
might
not
be
the
conveyor
belt
start
to
finish.
Medical
school
took
me
six
years,
which
I
did
not
appreciate,
but
I
do
appreciate
the
outcome.
And
quite
frankly,
if
I
had
to
do
it
again,
I
would.
I
absolutely
I
would
learn
from
it
and
do
it
easier,
but
but
I
would.
But
but
the
more
you
know
in
advance,
because
part
of
why
it
took
me
six
years,
I
didn't
understand
that
I
had
options
for
pausing
my
education
while
I
was
there.
So
instead
I
hit
my
Struggle
point,
struggle
to
the
point
that
I
needed
to
repeat
things
and
take
time
off,
but
not
by
choice.

unknown
44:07

Right.

SPEAKER_02
44:08

So
the
more
we
talk
about
what
you
can
do
in
advance,
the
more
you
can
anticipate.
And
that
gives
you
so
much
power
in
not
just
your
own
accommodations,
but
in
your
own
bodily
awareness
and
you
know,
taking
your
time
to
do
it
your
way
so
that
you
can.
So
that
when
something
gets
in
your
way,
because
we're
all
humans,
people
are
very
fond
right
now
of
pointing
out
that
that
having
a
disability
is
one
of
the
only
is
only
minority
group
that
anybody,
anybody
can
join
at
any
time.
Like
that.
And
that
people
are
like,
oh
yeah,
and
that
is
a
threat.
I
don't
mean
it
that
way,
but
I
mean
people
need
to
understand
that
these
are
skills
that
you
can
develop
to
anticipate
what
your
needs
might
be
and
that
that
might
change.
And
forgive
the
pun,
but
they
need
to
be
flexible.
So
it's
not
about
this
is
the
rigid
thing
that
I'm
gonna
do
if
and
when.
It's
about
how
can
I
create
a
structure?
How
can
I
create
a
system
so
I'm
not
playing
whack-a-mole
all
the
time?
I
am
returning
to
some
degree
of
structure
so
that
I
can
regroup
and
make
it
okay.
Yeah.
And
that
was
really
hard
to
learn.
And
if
I
can
help
even
one
person
have
an
easier
time
doing
that,
oh
my
God,
I'm
more
than
happy
to.
More
than
happy
to.

SPEAKER_00
45:14

I
love
that
I
get
to
do
that.
Well,
it's
like
so
refreshing
as
like
a
patient
to
hear
this,
you
know.
Where
were
you
when
I
was
a
child?
Although
I'm
older
than
I
think
we
were
probably
children
around
the
same
time.
So
I'm
sorry
I
couldn't
help
you.
Dang.
But
it's
just
like
it's
so
refreshing
to
hear
that.
This
is
like
the
time
where
as
a
patient
and
as
a
provider,
you
we
both
have
like
very
shared
experiences
in
in
some
circumstances,
but
mine,
I
definitely
had
like
the
endometriosis.
Like,
this
is
my
jam,
this
is
where
I
live
in
the
space
I'm
in.
Do
you
have
any
burning
questions
that
you
want
to
ask
me?

SPEAKER_02
45:54

And
I've
and
I've
talked
to
a
few
parents
about
this,
I've
talked
to
my
own
mother
about
this,
but
but
I
think
one
of
the
most
valuable
things
I
as
a
physician
can
ask
you,
what
do
you
what
would
you
want
your
pediatrician
to
ask
you
and
and
how
to
how
to
have
these
conversations?
What
do
you
want?

SPEAKER_00
46:11

I
think
one
of
the
things
that
we
as
people
with
endometriosis,
because
it
it
happens
so
early
on,
right?
Like
we
don't
even
have
to
have
our
menstrual
cycle
to
have
symptoms
of
endometriosis.
Wild,
yeah.
And
it's
crazy.
And
so
I
wish
someone
when
I
was
younger
would
have
sat
down
with
me
and
said,
are
there
things
that
you're
really
struggling
with?
Because
I
guarantee
they
would
have
picked
up
with
the
fatigue
being
number
one.
But
I
also
was
just
told
I
was
lazy.

SPEAKER_02
46:43

That
is
that
is
the
there's
something
like
I
hope
I'm
not
making
this
number
up,
but
something
like
90%
of
people
who
are
diagnosed
with
ADHD,
especially
in
adulthood,
have
had
that
experience.
I
uh
that
is
the
the
such
an
unkindness
to
humans.
Carry
on
what
we're
saying.

SPEAKER_00
46:59

Yeah,
yeah.
Well,
and
like
so
now
I
look
at
my
daughter
and
and
she
has
not
been
asked
this,
but
I
will
tell
you,
her
provider
did
point
out
one
of
the
things
she
said
that
I
appreciated
for
the
neurodivergent
aspect
of
it
or
ADHD,
she
asked
me,
How
did
conferences
go?
And
I
said,
Well,
she's
doing
great,
she's
you
know,
doing
well
in
her
classes,
she
just
daydreams.
Tell
me
more.
So
it's
not
my
favorite
question,
tell
me
more.

SPEAKER_02
47:24

I
know.
And
everyone's
like,
Oh,
okay.
And
then
there
we
are,
you
know,
tell
me
more.

SPEAKER_00
47:29

Tell
me
more.
And
so,
like,
she'd
go
through
it.
And
then
the
one
thing
that
I
would
say
was
missing
from
that
conversation
for
both
me
and
my
daughter
back
before
is
that
they
didn't
say,
Are
you
having
a
hard
time
sleeping
or
are
you
feeling
really
tired?
Or
that's
my
favorite
question.
Yeah,
yeah.
Like,
I
wish
that
someone
would
have
said
that
because
it
would
have
picked
up
on
a
lot
more.
However,
I
will
say
that
there
endometriosis
and
hypermobility,
all
of
that
have
corresponding
symptoms,
right?
So,
how
do
you
differentiate
the
two?
Who
knows?
But
there
are
different
things
like
are
you
having
pelvic
pain
or
and
kids
not
gonna
be
able
to
tell
you
that
are
there
things
on
your
body
that
hurt?

SPEAKER_02
48:13

Mm-hmm.
Mm-hmm.
Like
age
appropriate
questions
are
really
key.

SPEAKER_00
48:18

Yeah,
it's
like
I
wish
someone,
and
sometimes
I
wish
that
they
would
say,
Can
you
draw
me
a
map
of
how
your
body
feels?
That's
there
a
map.
Yeah.
Like,
if
you
had
to
map
out,
you
know,
what
you
feel
in
your
body,
could
you
tell
could
you
map
it
out
and
have
a
picture?
Because
I
can
tell
you,
like,
as
someone
who's
a
visual
learner,
it's
helpful
for
me
to
have
that
visual
aid
of
like,
you
know,
during,
you
know,
when
I'm
playing
at
recess,
this
area
hurts.
Because
they
don't
know
how
to
explain
that.
That's
great.
That's
really
smart.
Yeah.
Yeah.
So
that
would
be
like
the
only
thing
that
I
never
really
had.
And
and
I
wish
that
we
did
that
more,
is
how
we
learn
differently
and
how
we
I
think
it
would
make
things
better
because
we
don't
know
how
to
explain
our
symptoms,
but
but
we
can
tell
you
the
area
by
circling
it.
Yeah.
Sometimes.

SPEAKER_02
49:13

No,
I
love
that.
And
that's
like,
you
know,
what
I
was
saying
before.
Like
I
think
one
of
the
most
important
skills
that
I
have
unlearned
is
not
being
too
rigid.
There's
the
pun
again,
with
templated
conversations,
because
exactly
what
you
just
said,
tell
me
more.
That's
not
on
my
template.
Right.
Yeah.
But
so
often
it's
like,
you
know
what?
I
had
I
had
a
patient
recently
who
came
in
with
what
they
phrased
as
severe
fatigue.
I
was
like,
all
right,
we
can
do
this.
And
they
had
suspicions
about
EDS
and
about
dysautonomia
and
things
like
that,
totally
appropriate.
But
that
that
ended
up
taking
a
back
seat
because
they
started
explaining
how
much
sleep
they
were
getting
and
that
it
would
be
sort
of
three
days
of
just
waking
up
to
eat
and
eat
and
go
to
the
bathroom
and
then
back
to
sleep.
They
could
not
stay
awake
despite
having
stimulants
for
the
previously
diagnosed
ADHD.
And
I
was
like,
What
happens
after
the
three
days?
I
was
like,
oh,
I
kind
of
cycle.
And
then
I'm
like
awake
and
I'm
I'm
okay.
And
I'm
like,
all
right,
I
gotta
get
all
the
things
done.
And
I
was
like,
all
right,
there's
my
tell
me
more
question.
They
had
undiagnosed
bipolar
disorder.
Like,
genuinely.
And
I'm
very
cautious
about
going
in
a
psychiatric
direction
with
my
patients
because
that
has
been
overdone
a
lot
of
the
time.
And
in
this
case,
it
had
been
missed
because
it
was
type
two.
It
was,
it
was
hypomania,
not
true
mania.
So
it
was
just
that
they
were
getting
all
the
things
done,
but
they
didn't
need
sleep
for
five
days,
and
then
they'd
flip
back
into
the
sleep
schedule.
And
very,
very
reasonably,
it
had
been
going
in
the
direction
of,
you
know,
the
teenager
doesn't
want
to
go
to
school.
They're
just
just
all
the
things
that
I
won't
voice
aloud
because
they're
so
mean.
And
I'm
sitting
there
going,
Oh,
we
have
to
have
a
different
conversation
than
you
planned.
So
we
we
we
did,
and
it
went
really,
really,
really,
really
well.
And
also
they
have
ETS.
So,
you
know,
it
was,
it
was,
it
was
complicated,
but
but
that
just
that
moment
of,
you
know,
you've
said
that
in
a
way
that
doesn't
seem
to
fit,
tell
me
more,
huge.

SPEAKER_00
51:02

Right,
right.
Well,
and
even
so
so
one
of
the
things
I
was
looking
back
at
when
I
was
talking
to
my
mom
um
a
while
back
was
the
fact
that
I
had
taken
mitol
all
the
time.
And
no
one
ever
questioned
it.
No
one
ever
asked.
Right.
No,
because
I
always
had
like
severe
headaches
and
like
during
my
periods,
it
was
I
was
in
so
much
pain,
you
know.
And
so
no
one
ever
said,
Is
there
are
you
uh
are
you
taking
like
are
there
supplements
that
you're
taking?
And
we
they
ask
that
on
intake,
but
a
lot
of
times
we
don't
even
think
of
that
as
being
like
a
supplement
or
like
what
medications
are
you
taking
because
it's
not
prescribed,
right?
Oh
gosh,
yes.

SPEAKER_02
51:42

I
always
forget
what
I'm
taking
that
isn't
prescribed
for
myself.

SPEAKER_00
51:45

Right,
right.
So,
like,
boy,
are
there
things
that
are
helping
you
like
with
yeah,
are
you
taking
or
you
know,
are
what
are
some
things
that
help
bring
you
comfort?
Oh,
good
phrase.
Maybe
that's
a
way
to
phrase
that.
Yeah.
Like,
are
you
in
pain
that
and
what
are
ways
that
help
bring
you
comfort?
So
if
someone's
mentioning
that
they're
taking
mitol
or
ibuprofen
on
sp
you
know,
specific
times,
then
that's
a
really
good
indicator
that
there's
something
more
nefarious
going
on,
right?
And
so,
like,
no
one
ever
picked
that
up
for
me,
and
no
one
ever
picked
up
the
fact
that
the
chiropractor
was
constantly
adjusting
my
hips
and
my
back,
but
it
wasn't
getting
any
better,
kept
coming
back
out.

SPEAKER_02
52:24

Yeah.

SPEAKER_00
52:24

And
so,
and
it
was
definitely
worse
during
my
cycle,
which
I
didn't
put
the
correlation
there
until
you
know,
not
in
the
last
five
years,
that
a
lot
of
my
utero
sacral
ligament
pain
was
endo
because
it's
where
it
was,
you
know.
So,
like
no
one
ever
said
that,
or
the
cyclical
migraines,
you
know,
those
are
things
that
no
one
ever
talked
about
with
me
that
I
wish
they
would
have.
Because
I
think,
but
let's
be
honest,
they
weren't
talking
about
endometriosis
back
then
either.
True,
true,
yeah.
You
know
what
I
mean?
They
weren't
talking
about
EDS,
they
weren't,
they
didn't
even
know
what
that
was
half
the
time.
And
I'm
not
even
sure
if
I
talked
to
my
doctor,
they
would
have
known
what
endometriosis
was.

SPEAKER_02
53:01

Yeah,
you
know,
and
that's
it
wasn't
believed
as
a
as
a
pathology
until
the
1960s
or
something
like
that.
You
know,
they
didn't
even
find
it
until
then.

Curiosity Over Certainty In Medicine

SPEAKER_02
53:11

One
of
my
favorite
things
to
say
is
that
at
any
point
in
the
history
of
medicine,
we
have
always
thought
that
we
were
at
the
pinnacle
of
what
we
know.
But
we
have
always
thought
that.
So,
what
does
that
tell
us
about
what
else,
you
know,
we're
gonna
find
out?
We
also
split
open
an
atom
and
found
out
that
there's
stuff
inside
of
an
atom
fairly
recently
in
the
history
of
the
world.
So
it's
so
important
to
maintain
that
intellectual
curiosity
and
humility
about
what
we
don't
know.
And
you
can
still
maintain
confidence
in
what
we
do
know
and
what
we
think
works,
and
then
you
have
to
incorporate
changes
and
research,
and
that's
the
whole
point.
But
that's
also
the
fun
part,
that's
the
exciting,
interesting
part.
I
don't
want
to
be
a
robot,
it's
boring,
right?

SPEAKER_00
53:52

Exactly.
And
that's
what
you
know.
I've
always
said
like
I
think
part
of
the
problem
with
our
system
is
that
there's
a
lack
of
curiosity
or
time
for
curiosity.
Yes,
and
that's
not
some
that's
not
me
trying
to
dismiss
or
diss
the
healthcare
providers.
That
is
me
saying,
it's
okay
to
maintain
your
curiosity,
your
intellectual
curiosity,
and
not
be
okay
with
what
you
already
know,
but
but
be
curious
about
the
things
that
you're
unsure
of.
And
not
being
so,
you
know,
I
don't
want
to
say
egotistical,
because
I
don't
really
love
that
word,
but
there
is
that
that
sense
of
it,
right?
Like
you
don't
know
everything,
no
one
does.
The
body
is
magnificent,
the
world
we
live
in
is
magnificent,
it
it's
ever
changing,
right?
It's
evolving
into
something
different.
And
so
if
we
don't
approach
our
knowledge
and
understanding
that
way,
we're
missing
a
lot.
And
that's
where
I
feel
like
a
lot
of
patients
feel
very
frustrated,
you
know,
is
that
we
don't
feel
like
they're
curious
enough
to
help
us.
It's
that
if
they
don't
know
it,
you've
got
to
figure
it
out
for
yourself.
It's
not
that
method.

SPEAKER_02
55:02

First
of
all,
I
couldn't,
I
couldn't
agree
more.
I
I,
you
know,
in
again,
in
fairness
to
my
colleagues,
this
is
an
enormous
systemic
problem.
And
so
anyone
who
wants
to
be
curious
like
that
is
up
against
so
much.
Just
time,
bureaucracy,
paperwork.
It's
it's
a
huge,
huge
problem.
My
one
of
my
least
favorite
times
in
in
medical
school
was
being
told
actually
to
ask
fewer
questions.
And
I
just
could
not
fathom
how
that
was
supposed
to
be
helpful.
Now,
in
part,
it
was
just
I
needed
to
learn
sort
of
what
the
timing
of
those
things
were
done
best.
There
was
always
sort
of
what's
called
the
hidden
curriculum,
and
it
that
just
did
not
agree
with
me.
So
back
to
our
neurodivergent
conversation.
Now
I
have
suspicions
about
why.
But
in
any
case,
unofficially,
but
I
remember
the
jolt
of
the
cultural
there
was
a
there
was
like
a
cultural
shock
of
asking
too
many
questions
was
a
signal
to
most
of
the
educators
that
you
weren't
doing
your
own,
you
know,
at-home
learning
independently
and
that
you
were
sort
of
using
them
as
a
crutch,
which
I
thought
was
bananas
because
I
wanted
to
learn
from
the
expert
in
front
of
me
how
they
thought
about
the
problem.
I
wasn't
asking
to
not
do
my
own
work,
I
was
asking
for
engagement
and
learning,
like,
why
would
I
not
want
to
learn
from
the
expert
with
experience
in
front
of
me?
And
that
was
that
was
because
I
I
grew
up
in
a
in
a
in
just
a
cultural
environment
in
which
questions
were
extremely
important.
And
that
was
that
was
how
you
indicated
that
you
were
invested
and
interested.
And
to
not
ask
questions
was
rude.
Like
to
not
ask
questions
was
like,
no.
Um,
so
so
that
was
a
shocking
shift
for
me
academically
and
educationally.
It
did
not
work
well
for
my
brain.
It
still
doesn't
work
well
for
my
brain.
But
to
me,
the
value
of
being
near
someone
who
has
more
experience
is
being
able
to
ask
them
about
that
experience.
But
if
somebody
is
unwilling
to
change
with
the
science,
that's
really
very
off-putting.
Now,
I
will
say
again,
in
fairness,
that
the
way
the
way
we're
trained
is
very,
very
strange.
It's
it's
we
we
put
a
value
in
words
on
being
a
lifelong
learner.
That
phrase
comes
up
all
of
the
time.
We
put
value
on
what's
called
evidence-based
medicine.
And
that
that
is
not
a
bad
thing,
by
the
way,
in
case
anyone
is
listening.
Evidence-based
medicine
is
still
a
good
idea.
The
problem
is,
so,
and
what
evidence-based
medicine
means
is
that
I'm
not
just
making
stuff
up.
Evidence-based
medicine
means
we
use
the
data
available,
consensus,
guidelines,
you
know,
uh,
research
to
say,
yes,
this
is
not
only
fundamentally
sound,
but
the
research
shows
that
this
is
not
harmful,
that
this
is
most
helpful,
that
this,
you
know,
reduces
bad
outcomes,
whatever
it
is.
That's
all
fine
and
well.
But
if
you
have
a
population
that
hasn't
been
adequately
studied,
you
don't
have
evidence.
Right.
What
do
you
do
then?
And
that
doesn't
mean
that
they
don't
get
treatment.
It
means
I'm
off
on
an
adventure
trying
to
figure
it
out
with
very,
very
limited
information.
I
got
very,
very
lucky
that
in
my
training
hospital
for
residency,
we
had
an
entire
team
dedicated
to
treating
patients
with
no
roadmap.
And
the
physicians
who
are
on
that
team
remain
some
of
my
most
important
mentors
and
people
I
admire
most.
And
the
way
they
talked
about
what
they
did
was
a
willingness
to
say,
well,
there's
one
case
report
in
the
world.
Let's
add
another
one,
you
know,
and
just
willingness
to
understand
the
depth
of
what
we
do
know
and
what
we
don't
know,
and
then
to
say
that
the
life
in
front
of
me,
the
person
in
front
of
me,
is
important
enough
and
that
we've
had
the
conversation.
We're
not
going
in
blind
and
telling
the
parents
it'll
be
fine
and
we
know
what
we're
doing.
No,
we're
having
frank
conversations
that
this
is
an
unknown,
uncharted
territory,
but
we
are
going
to
do
the
best
we
can
because
your
child
matters.
Yes.
Yes.
But
we
get
scared
because
if
we're
doing
things
off
book,
there's
no
parachute
there.
And
we
live
in
a
culture
that
gets
sued
a
lot,
and
that
is
deeply
terrifying,
and
that's
fair.
I
don't
want
anyone
to
listen
to
this
and
think
we
should
all
be
off
doing
our
own
thing.
No,
that
is
absolutely
not
what
I'm
saying.
Right.
But
we
still
have
an
obligation
morally
to
treat
the
human
in
front
of
you
who
is
suffering.

SPEAKER_00
59:04

Yeah.
Even
if
we
don't
have
evidence.
Right.
Well,
and
that's
what's
scary,
right?
We
want
to
be
sure
of
things,
as
and
that's
just
our
human
nature.
There's
nothing
wrong
with
that.
Yeah.
We
want
to
know
the
outcomes.
We
want
to
know
that
we
aren't
taking
such
a
massive
risk
in
our
care
and
in
our
health.
Right.
And
so
and
that's
where
the
conversation
happens.
Right.
Yeah.
However,
are
you
any
better
not
being
curious
about
it?

unknown
59:30

No.

SPEAKER_00
59:31

Right.
Like
that's
the
thing.
Like
you
would
want
people
to
be
curious
so
that
you
can
be
better,
even
if
it's
on
charted
territory.
And
that's
where
I
think
a
lot
of
us,
even
if
the
doctor
doesn't
have
the
answer,
we
would
rather
them
be
honest
with
us
than
give
us
an
answer
that
doesn't
really
fit
the
mold.
Right.
In
a
way
that,
like,
you
know,
like
it
could
be
this,
I'm
not
really
sure.
And
as
opposed
to
saying,
you
know
what,
you
are
bipolar,
so
we're
gonna
give
you
this
medication.
And
it
doesn't
really
align
with
what
they're
going
through,
but
it's
the
only
thing
that
they
can
grapple
with.
Right.
Because
that
does
happen
a
lot,
you
know.
And
so
I
think
I
think
it's
okay
to
not
know
the
answer,
but
to
be
curious
enough
to
continue
learning
what
it
could
be.
And
I
think
patients
are
way
more
okay
with
that
than
not
getting
an
answer
at
all.

SPEAKER_02
1:00:20

They
already
know
that
things
aren't
lining
up
in
the
textbooks,
you
know,
where
they're
I'm
not
telling
them
anything
they
don't
know.
Um
and
most
of
the
time,
almost
all
the
time,
if
I
say,
Hey,
I
don't
know,
let's
figure
it
out
together,
they're
like,
Oh
my
God,
thank
you
so
much
for
being
honest.
I'm
so
and
and
then
we're
a
team.
We're
a
team
figuring
it
out
together,
you
know.
And
you
can
have
actually
the,
you
know,
the
people,
the
people
that
I
have
always
admired
most
were
the
people
who
were
able
to
say,
I'm
at
the
limit
of
what
I
know.
I
have
to
go
learn
more
or
find
someone
who
knows
more
or
some
combination.
And
to
me,
that
is
true
confidence
and
and
and
you
know,
awareness
of
your
own
knowledge.
But
there
were
physicians
that
taught
me
in
medical
school
that
you
have
to
never
kind
of,
you
know,
you
have
to
save
face
all
the
time
because
if
your
patient
thinks
you
don't
know,
then
they're
not
gonna
believe
in
you
or
trust
you
or
whatever.
And
I'm
like,
but
I
don't
know.
And
they
shouldn't
think
that
I
know
because
that's
lying
or
something.
Like
it
was
a
it
was
very
discordant
for
me.
And
I
understand
now
looking
back,
what
they
were
trying
to
say.
What
they
were
trying
to
say
is
that
you
can't
go
in
there
looking
like
this.
You
can't,
and
for
anyone
just
listening,
you
can't
go
in
looking
all
nervous.
Like,
don't
fine,
don't
do
that.
That's
not
a
that's
not
a
great
plan.
But
I
am
very
upfront
with
my
patients
when
we
are
in
uncharted
territory.
I
am
very
clear
when
there
is,
you
know,
two
case
reports,
and
they
are
so
grateful
that
I
found
the
case
reports.

SPEAKER_00
1:01:42

Right.

SPEAKER_02
1:01:42

They're
already
scared.
You're
not
you're
not
scaring
them
more
by
being
honest
with
what
isn't
out
there.
Most
of
the
time,
they've
already
learned
what's
out
there
because
my
patients
don't
have
the
foundation
underneath
them,
you
know,
in
terms
of
a
team.
They're
doing
their
own
reading.
They
have
read
the
case
reports
before
I
have.

SPEAKER_00
1:02:02

100%.
And
I
think
that's
like
the
doctor
should
meet
the
curiosity
of
the
patient's
curiosity.
Because
I
think
that's
something
that
we,
as
patients,
we
are
curious
about
our
health,
especially
if
it's
been
a
long
journey.
If
you
find
someone
that
is
not
as
curious
as
you
are,
it
may
not
be
a
good
fit
for
you.
Right.
Yeah.

SPEAKER_02
1:02:20

And
by
the
way,
like
for
my
colleagues,
it's
okay
to
be
you.
Like,
I
don't,
don't
be
something
you're
not.
That's
part
of
my
message
as

When Complex Patients Get Turned Away

SPEAKER_02
1:02:27

well.
But,
you
know,
a
a
a
weird
difficult
situation
for
complex
patients
that
I'm
seeing
now
is
that
they
are
often
turned
away
without
a
landing
spot.
So
on
the
one
hand,
it
is
very
appropriate
and
very,
you
know,
it's
it's
morally
sound
to
say,
I
don't
have
the
skills
for
this
and
I
don't
have
the
resources,
and
there's
no
way
that
I
can
get
enough
of
those
things
together
to
treat
you
properly.
Um,
and
I
would
be
doing
harm
if
I
tried.
That
is
not
an
immoral
thing
for
a
physician
or
other
clinician
to
say.
But
at
the
same
time,
if
the
patient
then
doesn't
have
somewhere
else
to
be,
uh-oh,
you
know,
right,
that
is
a
problem.
And
so
many
like
genetics
departments
are
saying,
oh,
but
we
don't
see
H
EDS.
And
then
people
with
other
types
of
EDS
are
inappropriately
getting
lumped
in
with
that
and
getting
denied
care
as
well,
even
though
they
have
a
distinct
genetic
mutation
that
that
is
treated
distinctly
and
appropriately.
Genetic
centers
and
and
complex
medicine
centers
are
turning
these
patients
away.
Yeah,
how
are
we
supposed
to
get
the
evidence?

SPEAKER_00
1:03:30

Right.
Right.
I've
been
turned
away
for
care
because
I
have
hypermobility
on
my
chart.
And
I
actually
asked
them
not
to
put
the
EDS
diagnosis
on
there,
just
hypermobility,
because
for
some
reason,
EDS
scares
a
lot
of
providers
and
it
could
be
completely
unrelated.
And
they
are
like,
I
don't,
I
don't
want
to
take
you
on
as
a
patient.

SPEAKER_02
1:03:48

And
you
know,
the
funny
thing
is
that,
and
I
think
I
would
feel
this
way
even
if
I
didn't
have
it
myself.
Like
medical
education
is
changing
a
lot
right
now,
where
in
the
last
50,
100
years,
we've
been
very
siloed.
You
know,
the
heart
does
not
talk
to
the
lungs,
does
not
talk
to
the
gut,
does
not
talk
to
the
whatever.
So,
you
know,
that's
how
we
learn.
And
now
there's
a
big
shift
in
making
it
much
more
uh,
I
want
to
use
the
word
interactive,
like
between
the
systems.
So
they're
not,
they're
not
in
separate
buckets
that
don't
talk
to
each
other
anymore.
We're
seeing
how
the
communication
actually
happens.
And
conditions
like
GDS,
lupus,
my
brain
is
forgetting
anything
else
as
an
example
right
now,
but
you
know,
but
there
are
so
many
examples
now
that
the
research
is
catching
up
of
how
very
systemic
conditions
can
affect
so
many
different
things.
And
those
conditions
are
being
used
as
examples
longitudinally,
which
is
to
say,
throughout
the
medical
school
curriculum,
you
know,
you
start
first
year
and
end
having
now
gone
through
it
all
system
by
system,
so
you
can
see
how
much
it
interacts
with
everything
else.
And
that
is
a
very
different
way
of
looking
at
education
and
looking
at
bodies
in
the
first
place.
And
I
think
that
shift
is
so
powerful
and
so
helpful
for,
you
know,
not
just
the
learning
now,
but
the
long-term
how
we
think
about
teaching
and
how
we
think
about
medicine.
This
is
this
is
important.
This
is
huge
and
it's
interesting.
These
conditions
are
interesting.
So

What Better Care Could Look Like

SPEAKER_02
1:05:07

oh
my
gosh.

SPEAKER_00
1:05:07

I
feel
like
we
could
go
on
for
hours,
hours.
Same.
This
has
been
like,
I'm
like,
I'm
invested.
I'm
invested
right
now
in
this.
Like,
because
I
love
what
I
get
to
talk
about.
I
really
do.
I
know
it's
so
fun.
And
I
love
having
these
conversations
because
it
opens
up
room
for
people
to
start
exploring
more.
And
I
think
this
is
true
for
both
the
patient
and
the
provider.
Like,
I
really
feel
like
if
we
can
start
the
conversation
together,
it's
going
to
lead
to
much
greater
outcomes
for
so
many
people.
And
that's
why
I
do
love
doing
podcasts
like
this,
is
because
I
get
to
learn.
And
I
know
that
if
I'm
learning,
I
hope
other
people
are
learning
as
well.
Because
I
am
just
a
very
simple
person
who
is
very
curious.
And
so
this
affects
so
many
of
us
and
it
and
it
affects
our
whole
lives.
And
that's
why
we
have
to
talk
about
it
more.
And
that's
why
I'm
so
grateful
for
you
to
continue.
You,
with
your
curiosity
and
your
mind
and
your
experience,
both
lived
and
clinical,
that
you're
willing
to
open
up
and
just
sit
in
this
space
and
open
up
that
dialogue.
Thank
you.
So
that
we
can
understand
this
more.
It's
so
impactful.

SPEAKER_02
1:06:14

Well,
I
really
consider
myself
very,
very
lucky
to
have
platforms
like
these
and
be
able
to
share
these
experiences.
I
think
if
um,
you
know,
if
if
we
all
just
said
I
don't
want
to
be
the
one
to
deal
with
it,
then
we
make
no
progress.
And
and
I
don't
like
leaving
other
people
to
suffer.
I
was
I
was
raised
not
to
do
that.
You
know?
So
and
I've
been
asked,
and
and
and
this
gets
kind
of
dark,
but
I've
been
asked
several
times
by
friends
going
through
very,
very
dark
periods
related
to
their
chronic
illness,
you
know,
how
I
cope
with
things
like
the
pain
and
the
ongoing
symptoms.
And
the
the
very
simple
truth
of
it
is
that
if
I
have
the
opportunity
to
use
what
I
have
lived
through
and
experienced
to
make
it
easier
for
the
next
person
who
has
that
going
on,
then
it's
worth
it
to
me.

SPEAKER_00
1:06:58

Yeah,
absolutely.
I
think
this
conversation
just
highlights
something
that
we
talk
about
often
in
the
endometriosis
community.
Our
bodies
are
just
deeply
interconnected
and
conditions
rarely
exist
in
isolation.
There's
more
understanding
and
overlap
in
between
connective
tissue
disorders
like
EDS
and
conditions
like
endometriosis,
like
we're
learning
all
of
this,
that
we
can
better
support
patients
earlier
and
more
effectively.
Like
that's
key.
So
I
thank
you
in
being
part
of
that
and
taking
the
time
to
sit
down
with
me
and
and
break
this
down
a
little
bit
more.

Questions, Next Steps, And Goodbye

SPEAKER_00
1:07:33

I
would
love
to
have
you
on
again
at
some
point.
So
if
anyone
has
more
questions
for
Dr.
Cohen
Solomon,
please,
please,
please
let
us
know.
This
is,
I
think
this
is
where
we
need
to
start
in
the
adolescence,
because
that's
how
we
create
change
further
on.
Because
a
lot
of
us
are
like,
well,
that
our
stories
have
already
happened.
It's
still
happening.
But
still
happening.
Yeah,
you
can
make
it
better
earlier
on.

SPEAKER_02
1:07:56

Yeah.
What
what
a
different
world
it
would
be
if
we
started
earlier
for
these
people.
So
I'm
thrilled.
I'd
love
to,
I'd
love
to
come
on
again.
This
was
this
was
fun.
This
is
probably
too
much
fun.

unknown
1:08:06

Probably
too
much
fun.

SPEAKER_00
1:08:07

I
like
having
fun.
Same.
So,
yes.
Well,
thank
you
so
much.
And
until
next
time,
everyone,
continue
advocating
for
you
and
for
others.