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TW* Pregnancy loss, infertility, suicidal ideation
When Casey Berna, a fierce clinical social worker and endo warrior, graced our podcast, the air buzzed with the spirit of advocacy and the unwavering strength of those battling endometriosis. Her story is one of transformation—from personal trials with endometriosis and infertility to a beacon of hope and guidance for thousands. Join us as we navigate the often unseen trials of chronic illness and mental health, spotlighting Casey’s remarkable journey and her tireless work in patient advocacy, including her influential role in shaping the National Action Plan for Endometriosis.
The support that cocoons us in our darkest moments can be as crucial as the air we breathe. This episode sheds light on the silent warriors—the caregivers who stand by those grappling with endometriosis. We share invaluable resources and insights to aid in understanding and managing the emotional weight that caregivers shoulder. Through candid conversations, we reveal the emotional toll on those caring for loved ones, and how fostering empathy within support systems can build resilience and understanding in the face of chronic illness.
Empowerment threads through our discussion as we underscore the importance of educating young people about their bodies and conditions like endometriosis. By dismantling the barriers of secrecy and shame stitched into past generations, we pave the way for open dialogue and community support. Our exploration culminates in recognizing the solace that communal bonds provide to those feeling isolated by their condition, and how discovering purpose through advocacy can reignite a sense of control and belonging. Casey and I invite you to pour a cup of tea and join a table ringed with shared experiences, understanding, and an ironclad community spirit.
Website endobattery.com
Advocacy and Awareness in Endometriosis
Speaker 1
0:03
Welcome
to
EndoBattery
,
where
I
share
about
my
endometriosis
and
adenomyosis
story
and
continue
learning
along
the
way
.
This
podcast
is
not
a
substitute
for
professional
medical
advice
or
diagnosis
,
but
a
place
to
equip
you
with
information
and
a
sense
of
community
,
ensuring
you
never
have
to
face
this
journey
alone
.
Join
me
as
I
navigate
the
ups
and
downs
and
share
stories
of
strength
,
resilience
and
hope
.
While
navigating
the
world
of
endometriosis
and
adenomyosis
,
from
personal
experience
to
expert
insights
,
I'm
your
host
,
alana
,
and
this
is
EndoBattery
charging
our
lives
when
endometriosis
drains
us
.
Welcome
back
to
EndoBattery
.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table
.
Today
,
I'm
joined
by
Casey
Berna
.
Speaker 1
0:49
Casey
is
a
clinical
social
worker
that
began
her
work
in
endometriosis
,
fertility
and
pregnancy
loss
communities
after
experiencing
these
difficult
health
struggles
herself
.
For
over
a
decade
.
Casey
has
supported
thousands
of
patients
through
counseling
,
support
groups
and
her
role
as
a
patient
advocate
.
She
collaborates
with
global
nonprofits
and
community
leaders
to
challenge
the
systemic
issues
that
are
causing
patients
harm
,
while
also
being
a
leading
voice
on
the
impact
these
issues
have
on
mental
health
.
Over
the
years
,
casey
has
presented
her
work
at
national
endometriosis
conferences
and
has
been
part
of
many
panels
as
an
expert
mental
health
provider
.
Her
documentary
Endotruths
the
Impact
of
Endometriosis
and
mental
health
provider
.
Her
documentary
Endo
Truths
the
Impact
of
Endometriosis
and
Infertility
on
Mental
Health
was
accepted
into
the
Unmentionables
Film
Festival
in
New
York
City
.
Casey
is
proud
to
be
an
assistant
producer
of
the
film
Below
the
Belt
and
was
honored
to
collaborate
with
EndoWet
to
help
craft
the
National
Action
Plan
for
Endometriosis
,
which
was
presented
to
members
of
Commagurus
in
2023
.
Speaker 1
1:44
Please
help
me
by
welcoming
Casey
Berna
.
Thank
you
,
casey
,
so
much
for
joining
me
today
.
I'm
excited
to
have
you
on
.
You've
been
doing
so
many
great
things
within
the
endometriosis
community
and
it's
just
an
honor
to
have
you
join
me
today
at
the
table
.
Speaker 2
2:00
Oh
goodness
,
that
is
so
kind
.
It
is
truly
an
honor
and
privilege
to
share
space
with
you
today
and
thank
you
for
all
that
you
do
for
our
community
.
Speaker 1
2:08
Yes
,
absolutely
Takes
a
team
to
make
it
happen
.
Right
For
sure
.
You
work
in
the
social
work
arena
,
but
you
are
also
an
endo
warrior
.
How
did
you
marry
those
two
to
do
what
you're
doing
with
advocacy
and
awareness
in
this
community
?
Speaker 2
2:28
Absolutely
.
It
was
around
the
same
time
,
I
would
say
,
that
endometriosis
started
impacting
my
life
,
although
it
would
be
many
years
,
like
many
patients
,
before
I
received
a
diagnosis
or
knew
what
was
going
on
.
And
also
around
the
same
time
,
in
high
school
,
I
really
became
interested
in
social
work
.
My
high
school
that
I
went
to
had
a
lot
of
social
justice
classes
and
I
really
enjoyed
talking
to
my
school
counselors
and
learning
about
what
they
did
.
And
I
decided
to
go
to
a
college
that
had
a
five-year
program
for
social
work
where
I
could
get
my
MSW
,
you
know
,
just
a
year
after
graduating
undergrad
,
which
I
was
really
excited
about
,
and
at
the
same
time
I
started
having
.
Speaker 2
3:15
In
high
school
I
got
my
period
and
started
having
a
lot
of
stomach
issues
.
By
the
end
of
high
school
,
and
certainly
like
by
the
time
I
was
in
college
,
I
was
a
regular
at
the
gastroenterologist
,
having
all
these
tests
and
procedures
which
I
know
a
lot
of
patients
can
relate
to
and
you
know
them
just
saying
oh
,
I
think
it's
anxiety
or
oh
,
I
think
it's
stress
.
I'm
like
you
would
have
stress
too
if
you
had
horrible
periods
and
were
prone
to
like
if
you
had
horrible
periods
and
were
prone
to
like
,
you
know
,
chronic
diarrhea
.
That
would
also
be
stressful
.
So
then
I
graduated
and
started
working
in
a
school
setting
where
that
was
all
girls
and
actually
now
that
I
look
back
on
it
probably
had
a
lot
of
students
who
also
had
endometriosis
,
but
I
didn't
know
at
the
time
.
Speaker 2
3:59
And
then
my
periods
became
worse
and
worse
and
eventually
I
got
married
and
started
having
fertility
issues
,
which
is
when
I
was
diagnosed
,
finally
,
with
endometriosis
.
And
yet
still
they
kind
of
said
,
oh
you
have
a
little
bit
of
endometriosis
,
that
the
reproductive
endocrinologist
still
didn't
really
have
a
grasp
on
my
disease
.
So
it
took
me
even
years
after
that
I
had
appendectomy
,
I
had
my
gallbladder
out
,
I
had
years
of
fertility
treatments
and
it
really
wasn't
until
I
was
probably
about
30
years
old
that
I
finally
saw
an
endometriosis
specialist
.
And
after
I
learned
more
about
it
and
also
went
through
recurrent
pregnancy
loss
and
infertility
,
I
was
kind
of
like
goodness
my
social
work
skills
could
be
used
in
the
community
,
that
it
absolutely
had
impacted
my
mental
health
and
there
were
so
many
unique
things
about
endometriosis
that
made
it
incredibly
challenging
,
whereas
mental
health
support
was
so
needed
.
So
then
after
that
I
just
started
working
,
doing
counseling
with
patients
,
working
with
endo
warriors
,
to
start
doing
support
groups
in
my
area
and
then
also
started
doing
a
lot
of
advocacy
,
and
that's
kind
of
how
it
all
came
together
.
Speaker 1
5:16
Can
you
define
the
role
of
a
social
worker
,
because
I
think
you
know
a
lot
of
us
are
aware
of
therapists
and
counselors
and
other
mental
health
support
people
,
but
they're
not
aware
of
the
social
work
aspect
of
it
.
Can
you
tell
us
what
the
role
is
of
a
social
worker
and
what
they
do
?
Speaker 2
5:35
Yes
,
I
was
drawn
to
social
work
because
I
love
how
it's
sort
of
all
encompassing
,
like
you
can
sort
of
,
as
a
social
worker
,
be
a
licensed
clinical
social
worker
and
focus
on
clinical
social
work
,
which
is
that
of
a
mental
health
provider
similar
to
other
mental
health
providers
in
the
field
.
But
what
I
also
really
love
about
social
work
is
,
by
nature
it's
kind
of
a
multidisciplinary
approach
.
By
nature
,
social
workers
look
to
resources
and
the
community
to
help
support
patients
.
They
look
at
the
systemic
issues
that
are
happening
in
the
community
that
can
.
What
are
the
patient's
resources
,
what
are
their
strengths
,
what
is
their
family
dynamic
look
like
?
But
then
you
also
look
at
how
do
the
ACOG
practice
guidelines
impact
patients
?
Speaker 2
6:31
How
does
health
insurance
impact
patients
?
How
,
you
know
,
do
the
education
that
providers
get
impact
patients
?
What
are
,
like
,
community
resources
that
can
help
support
patients
?
So
that's
why
I've
always
been
passionate
about
social
work
,
because
it
just
encompasses
not
only
mental
health
but
also
you
have
to
look
at
like
how
does
racism
impact
patients
?
You
have
to
look
at
all
of
these
broader
issues
that
absolutely
have
an
impact
on
their
mental
health
and
well
being
as
well
.
Speaker 1
7:01
Absolutely
Challenges in Endometriosis Care and Support
Speaker 1
7:02
.
What
are
some
of
your
biggest
challenges
that
you
face
in
doing
what
you
do
?
I
?
Speaker 2
7:07
think
you
know
,
when
I
lived
in
New
York
City
,
I
lived
.
Well
,
I
didn't
live
in
New
York
City
,
I
lived
just
outside
,
but
I
had
a
practice
in
New
York
City
for
a
long
time
and
I
felt
like
there
were
more
options
for
multidisciplinary
care
.
Now
I'm
in
Wilmington
,
north
Carolina
,
so
one
really
big
challenge
that
I
have
when
I
meet
with
a
patient
is
the
fact
that
there
is
no
endometriosis
excision
specialist
in
Wilmington
,
north
Carolina
.
Not
a
shocker
,
not
a
shocker
even
though
there
are
providers
who
may
think
they're
specialists
.
Speaker 2
7:42
So
I
think
that's
a
really
big
challenge
for
my
patients
in
particular
is
I'm
sending
them
hours
away
to
try
and
get
care
.
Another
big
challenge
I
think
for
all
patients
is
finding
a
provider
that
is
accessible
,
right
,
affordable
,
accessible
,
like
takes
their
particular
insurance
.
So
that's
like
a
really
big
challenge
.
But
then
you
also
have
things
like
I
have
patients
,
multiple
patients
who
say
they
have
a
parent
who's
a
narcissist
,
you
know
,
suspected
,
has
narcissistic
personality
disorder
and
sort
of
trying
to
navigate
their
disease
like
without
that
support
.
Or
you
know
patients
who
are
feeling
a
lot
of
anxiety
.
Speaker 2
8:22
I
think
I
forget
what
the
statistic
is
,
but
a
lot
of
patients
with
endometriosis
experience
anxiety
,
depression
and
also
sometimes
suicide
ideations
.
So
I
think
that's
also
a
really
big
challenge
for
patients
is
having
those
challenges
like
on
top
of
chronic
pain
,
although
they're
often
like
woven
together
and
interconnected
.
You
know
,
finding
them
other
multidisciplinary
care
is
really
hard
,
like
finding
them
a
pelvic
floor
therapist
in
town
who
like
understands
.
So
I
mean
I
think
that's
just
like
some
of
the
challenges
that
a
lot
of
patients
that
I
see
face
for
sure
.
Speaker 1
8:58
Absolutely
.
I
mean
,
I
feel
like
all
of
us
do
at
one
time
or
another
right
Like
I
don't
really
know
an
endometriosis
patient
that
hasn't
experienced
roadblocks
in
care
and
in
support
.
And
I
think
what's
interesting
is
,
you
brought
up
a
really
interesting
point
about
the
support
people
piece
and
I
think
it
can
kind
of
go
usually
two
ways
you
either
have
really
good
,
strong
support
people
or
you
have
the
support
people
that
kind
of
perpetuate
what
you're
already
feeling
in
the
medical
system
.
So
when
you're
dealing
with
a
patient
that
has
lack
of
support
,
how
do
you
manage
that
?
How
do
you
approach
that
with
those
patients
?
Because
that's
really
hard
.
Speaker 2
9:43
It's
really
.
It's
really
really
challenging
and
,
like
you
said
,
especially
because
a
lot
of
patients
struggle
to
find
providers
who
really
understand
what's
going
on
.
So
often
patients
will
go
to
providers
and
their
symptoms
will
get
dismissed
or
they'll
get
,
you
know
,
misdiagnosed
and
then
they'll
they've
been
gaslit
,
they
.
You
know
all
of
these
things
sort
of
like
happen
and
the
same
thing
is
,
you
know
,
happening
like
within
their
family
.
You
know
it's
interesting
,
like
we've
learned
that
endometriosis
has
a
genetic
nature
and
so
if
you
have
like
a
mom
or
sister
,
aunt
or
a
family
member
that
has
endometriosis
,
like
you're
more
likely
to
have
it
.
But
what's
so
fascinating
what
I
found
too
,
that
can
be
generational
as
well
is
the
ideas
behind
like
menstruation
,
the
ideas
behind
having
chronic
pain
and
those
sort
of
like
beliefs
on
how
to
treat
it
or
how
to
address
it
or
how
you
get
empathy
for
it
or
comforted
for
it
are
also
passed
down
.
Speaker 2
10:47
So
often
,
you
know
parents
were
dismissed
for
their
puberty
and
they
were
telling
,
being
told
,
oh
,
just
suck
it
up
or
you
just
have
to
like
get
over
it
or
your
stress
that's
causing
it
,
all
these
things
.
And
then
you
know
,
when
they're
teen
or
even
like
grown
adult
,
like
child
,
is
dealing
with
it
.
They
are
saying
the
same
things
,
you
know
,
like
,
oh
,
you
just
have
to
suck
it
up
and
,
you
know
,
just
get
out
of
bed
like
,
do
what
you
have
to
do
,
which
then
can
make
patients
feel
so
isolated
when
they
don't
have
someone
in
their
life
who
really
understands
or
at
least
provides
empathy
,
you
know
.
And
then
often
patients
will
internalize
that
voice
so
they'll
be
like
really
hard
on
themselves
and
say
the
same
things
to
themselves
and
blame
themselves
because
that
is
what
they've
grown
up
hearing
.
And
that's
something
in
therapy
that
I
work
with
patients
to
sort
of
unravel
that
internal
voice
and
make
it
filled
with
a
lot
more
empathy
and
grace
and
love
.
Speaker 1
11:46
Yeah
,
when
you're
working
with
those
that
maybe
live
within
an
underprivileged
community
,
how
do
you
help
them
navigate
that
with
the
support
?
Because
I
know
in
talking
to
other
people
about
this
very
thing
,
it's
hard
for
certain
communities
to
be
able
to
reach
out
or
find
a
way
to
support
their
loved
ones
because
they
themselves
don't
believe
in
the
medical
system
or
they've
gone
through
trauma
of
their
own
and
they
kind
of
back
away
from
supporting
in
effort
to
protect
themselves
.
You
know
,
I
think
that
that
tends
to
be
a
really
real
outcome
for
some
people
who've
been
through
that
medical
trauma
.
How
do
you
help
people
navigate
through
that
?
Speaker 2
12:24
I
think
that's
really
hard
in
that
sort
of
.
There's
a
lot
of
talk
about
intergenerational
trauma
like
that
can
be
passed
along
and
I
feel
like
Lauren
Cornegay
from
End
of
Black
speaks
about
this
so
beautifully
and
often
she
talks
about
.
One
community
that
struggles
is
the
African
American
community
due
to
racism
,
right
,
systemic
racism
in
the
medical
industrial
complex
,
as
well
as
racial
bias
with
providers
.
You
know
they
are
more
likely
to
be
dismissed
,
like
for
their
pain
.
They
are
more
likely
to
be
misdiagnosed
.
They're
more
likely
to
be
undertreated
for
pain
.
Lawrence
talked
about
how
often
in
certain
neighborhoods
this
goes
for
you
know
,
even
like
rural
neighborhoods
too
,
I've
worked
with
rural
patients
that
the
healthcare
access
available
is
not
equipped
to
treat
endometriosis
patients
Like
there
aren't
the
supports
that
are
needed
,
so
patients
don't
often
have
that
access
to
care
and
then
,
because
of
the
trauma
that
a
lot
of
patients
have
experienced
,
they
do
not
trust
.
You
know
medicine
in
a
lot
of
different
ways
.
Speaker 2
13:28
So
I
think
working
with
patients
and
finding
providers
well
first
of
all
like
finding
their
people
right
,
like
their
.
You
know
,
endoqueer
has
a
private
group
.
Les
Henderson
started
endoqueer
.
They
have
done
a
phenomenal
job
being
a
leader
in
the
community
,
so
they
have
a
private
group
.
So
you
know
directing
,
you
know
,
trans
patients
to
the
EndoQueer
group
where
they
could
find
other
folks
who
need
care
that
is
culturally
appropriate
and
sensitive
,
and
you
know
,
sending
them
to
Lauren's
private
group
,
also
her
conferences
.
Speaker 2
14:05
So
I
think
,
like
finding
other
folks
in
the
community
within
the
end
of
community
that
you
can
relate
to
and
like
bond
with
and
see
yourself
in
is
really
important
.
And
then
also
finding
providers
who
you
know
give
culturally
competent
care
and
who
you
know
are
going
to
have
paperwork
that
offers
access
to
all
pronouns
right
,
that
you
know
are
able
to
sort
of
hold
space
and
validate
any
patient
who
comes
through
their
door
.
So
I
think
like
that's
really
important
.
And
just
for
me
as
a
provider
,
understanding
I
make
sure
I
go
to
training
where
I
equipped
and
educated
to
hold
space
for
all
sorts
of
folks
who
have
endometriosis
,
and
then
really
what
I
found
is
just
holding
space
,
believing
people
,
believing
their
story
,
believing
their
pain
,
sending
them
for
resources
that
are
appropriate
can
help
lower
anxiety
and
lower
depression
so
much
.
Even
within
that
first
session
it
could
be
so
helpful
.
Speaker 1
15:02
Absolutely
.
I
think
all
of
us
want
to
feel
that
sense
of
validation
and
when
you
have
people
that
often
get
invalidated
within
society
norms
,
it
becomes
even
more
challenging
Supporting Support People in Chronic Illness
Speaker 1
15:13
.
And
I
want
to
come
back
to
the
support
piece
in
just
a
second
for
the
community
aspect
of
it
.
But
I
want
to
camp
on
this
because
I
think
it's
important
.
How
do
you
help
support
people
who
are
supporting
chronically
ill
people
?
Because
this
is
a
whole
ball
of
wax
that
I
think
that
we
often
overlook
in
the
endometriosis
community
.
We
can
look
at
the
endometriosis
patient
,
but
the
support
people
are
going
through
it
.
I
mean
,
I
don't
know
those
who
are
wanting
to
support
so
much
this
person
that
aren't
themselves
needing
the
support
.
How
do
you
walk
families
through
this
?
How
do
you
walk
the
support
people
through
getting
support
for
themselves
while
also
supporting
the
chronically
ill
person
?
Speaker 2
15:58
Yes
,
a
lot
of
what
I
do
is
provide
education
,
right
.
So
I
am
sending
out
a
link
to
Shannon's
Below
the
Belt
documentary
and
I'm
saying
,
like
,
watch
this
so
you
can
learn
more
.
I
have
done
so
many
sessions
with
parents
,
like
,
invite
your
parents
in
,
like
we'll
do
,
we'll
all
do
a
telehealth
session
and
this
way
they
could
ask
questions
and
get
more
information
and
get
more
resources
.
Also
,
you
know
,
sharing
books
.
I
have
like
a
list
of
books
on
my
website
that
I
know
would
help
.
I
encourage
them
to
join
,
like
Nancy's
,
nook
or
other
groups
.
I
think
you
know
,
just
like
with
patients
themselves
,
validate
how
hard
this
is
and
that
it
is
stressful
and
that
you're
probably
feeling
like
you're
not
in
control
and
you're
probably
feeling
helpless
and
that
is
how
your
loved
one
with
the
disease
is
feeling
.
Speaker 2
16:51
So
,
like
validating
that
,
educating
them
,
like
I
said
,
by
giving
them
a
lot
of
resources
,
and
then
also
sort
of
like
challenging
them
to
think
about
their
own
anxiety
.
How
does
feeling
helpless
,
does
it
trigger
your
anxiety
?
And
then
what
does
that
look
like
?
Does
it
make
you
feel
irritable
?
Does
it
make
you
feel
angry
?
Do
you
get
short
?
Do
you
disconnect
?
Speaker 2
17:12
And
sort
of
helping
them
be
aware
of
when
they
sort
of
like
this
part
of
their
brain
,
the
emotional
part
of
their
brain
,
gets
triggered
.
How
are
they
showing
up
,
like
,
what
is
their
fight
flight
freeze
response
?
And
trying
to
be
mindful
of
that
,
because
often
that
response
isn't
helpful
to
the
patient
,
right
,
and
it
doesn't
help
the
patient
feel
regulated
.
So
just
sort
of
also
giving
them
some
awareness
about
like
,
how
are
you
feeling
Like
and
how
are
you
showing
up
for
the
patient
?
And
is
it
helpful
,
like
,
is
it
kind
If
you
give
a
suggestion
,
is
it
a
helpful
suggestion
?
Is
it
a
kind
suggestion
?
Did
the
patient
ask
for
a
suggestion
?
So
just
sort
of
like
going
through
all
those
things
and
just
recognizing
like
this
is
really
hard
and
it's
not
going
to
be
solved
within
a
day
.
And
you
know
,
many
endo
patients
also
have
other
chronic
illnesses
too
.
So
you
know
,
just
to
like
give
that
awareness
as
well
.
Speaker 1
18:06
Absolutely
,
I
think
,
one
of
the
things
that
my
husband
has
pointed
out
to
me
in
discussion
like
we
have
talked
about
this
on
the
podcast
before
,
but
we've
talked
about
the
need
for
community
,
even
for
the
support
people
,
and
he
didn't
recognize
that
he
was
walking
through
some
of
this
or
that
he
bottled
certain
things
up
or
that
this
was
common
amongst
those
supporting
chronically
ill
people
,
and
so
when
he
started
having
these
conversations
he
was
like
it
actually
created
a
community
for
me
and
it
validated
what
I
was
going
through
and
it
really
helped
me
walk
through
it
and
see
it
very
differently
.
The
podcast
hasn't
aired
yet
the
one
that
he
recorded
with
a
couple
others
,
but
they
talked
about
this
.
They
talked
about
what
it
looks
like
from
a
husband's
perspective
to
support
a
spouse
that
has
been
going
through
a
chronic
illness
,
an
endometriosis
,
and
then
what
it
looks
like
to
be
a
dad
or
a
potential
dad
,
or
to
have
a
desire
to
be
a
dad
,
but
are
struggling
with
infertility
issues
and
just
going
through
all
their
emotions
that
they
had
and
all
the
things
that
they've
bottled
up
,
because
they
are
the
ones
that
feel
like
they
have
to
be
the
strength
behind
the
people
they're
supporting
.
And
what
he
came
back
with
was
.
I
needed
that
more
than
I
realized
and
it
allowed
him
to
release
some
of
the
pain
and
the
frustration
that
he
has
felt
over
the
years
,
because
he
acknowledged
it
and
I
think
that
a
lot
of
support
people
forget
to
acknowledge
their
pain
and
forget
to
acknowledge
or
choose
not
to
acknowledge
their
struggles
and
their
anxieties
and
their
depressions
and
supporting
these
people
that
are
really
going
through
it
,
because
they
make
their
situation
less
than
what
the
other
person's
going
through
.
Supporting Loved Ones With Chronic Illness
Speaker 1
19:57
Well
,
I
have
nothing
to
complain
about
because
my
loved
one
is
going
through
this
and
they
can't
get
out
of
bed
.
But
really
you
have
a
lot
to
complain
about
too
.
Not
to
complain
,
but
you
have
a
lot
to
worry
about
because
you're
seeing
this
happen
and
there
isn't
anything
you
can
do
and
the
trauma
of
that
on
the
support
people
is
intense
.
And
then
you
get
the
doctor
situation
on
top
of
that
.
You
know
being
dismissed
and
not
finding
a
good
doctor
or
feeling
hopeless
and
for
those
who
are
fixers
,
you
really
struggle
with
this
.
Speaker 1
20:30
And
so
it's
a
really
hard
balance
and
that's
why
I
want
to
bring
it
back
to
the
community
,
because
as
much
as
we
with
endometriosis
need
community
,
those
who
are
the
support
people
of
chronically
ill
people
need
community
.
Speaker 2
20:44
Yes
,
for
sure
.
I
think
just
as
patients
feel
isolated
,
the
support
people
also
feel
incredibly
isolated
because
society
does
a
really
good
job
in
sort
of
having
awareness
around
other
diseases
and
illnesses
.
Like
you
know
,
if
your
partner
has
cancer
it's
really
horrible
.
But
I
feel
like
then
the
community
like
for
example
,
recently
someone
in
my
neighborhood
was
diagnosed
with
like
a
terrible
cancer
and
the
neighborhood
,
everyone
like
came
together
,
everyone's
supporting
the
family
,
even
for
things
like
the
flu
.
Folks
in
the
community
know
to
drop
off
soup
,
they
know
to
leave
it
at
the
doorstep
like
can
I
go
food
shopping
for
you
?
Speaker 2
21:25
But
a
lot
of
things
with
endometriosis
and
infertility
or
pregnancy
loss
,
folks
don't
know
what
endometriosis
is
.
Speaker 2
21:32
A
lot
of
the
times
they
don't
know
how
to
help
and
often
the
person
not
only
the
patient
but
the
support
people
going
through
it
there
isn't
that
sort
of
rallying
that
like
automatically
happens
,
like
for
some
other
things
,
or
that
understanding
of
needs
.
Speaker 2
21:49
So
it
absolutely
can
make
a
partner
feel
incredibly
isolated
and
I
think
anytime
they
can
reach
out
,
as
Sally
Sorrell
with
the
Endometriosis
Summit
I
think
it's
still
on
their
YouTube
page
they
have
something
called
like
how
to
support
a
loved
one
and
we
interviewed
it
was
Les
Henderson
and
their
partner
.
Speaker 2
22:09
It
was
like
a
mom
and
a
daughter
and
I
think
it
was
like
another
patient
and
her
husband
,
like
it
was
a
group
of
people
and
we
sort
of
interviewed
them
all
and
it's
a
great
resource
for
you
know
partners
or
loved
ones
out
there
to
sort
of
listen
so
that
they
don't
feel
alone
and
they
don't
feel
so
isolated
.
And
I
wish
you
know
a
lot
of
my
patients
.
I
was
like
what
if
,
like
,
your
family
had
gone
to
therapy
to
understand
this
better
,
to
be
able
to
support
you
better
,
like
how
much
better
would
you
feel
?
And
often
it's
a
lot
better
.
You
know
,
like
having
that
belief
and
that
support
and
that
foundation
can
really
be
life
changing
for
a
lot
of
patients
who
it's
just
like
another
obstacle
if
family
members
don't
know
how
to
be
present
or
be
supportive
.
Speaker 1
22:53
I
also
think
it
would
be
helpful
for
those
who
know
that
they
are
absolutely
supported
but
feel
the
guilt
of
it
,
because
,
I
mean
,
I
know
for
myself
,
I
often
feel
guilty
for
the
strain
,
or
perceived
strain
,
on
my
family
and
I
think
that
it
would
be
so
helpful
for
us
to
sit
down
and
talk
through
that
.
And
I
know
for
my
husband
and
I
,
when
we
sat
down
and
had
that
conversation
,
it
was
very
enlightening
to
me
and
the
amount
of
guilt
that
I
was
holding
on
to
wasn't
necessary
.
You
know
,
it
wasn't
something
that
he
wanted
to
put
on
me
and
I
think
that
if
you
sit
down
and
have
those
conversations
,
I
think
there's
something
to
be
said
about
how
it
impacts
your
overall
health
too
right
,
so
that
would
be
something
that
I
would
encourage
anyone
to
do
,
but
just
to
be
able
to
open
up
that
conversation
,
if
you
have
the
ability
to
,
because
there's
so
much
healing
to
take
place
in
that
.
Speaker 2
23:47
Absolutely
Often
patients
feel
guilty
and
guilt
tends
to
be
also
something
else
that
can
be
passed
down
from
generation
to
generation
for
sure
,
like
a
culture
of
guilt
,
also
like
a
lot
of
self
blame
.
Speaker 2
23:58
I
feel
like
endometriosis
patients
,
myself
included
,
are
some
of
the
people
who
are
like
the
most
hard
on
themselves
,
and
often
patients
would
give
others
the
world
right
Like
and
not
think
twice
about
it
right
,
except
like
when
they're
in
need
,
that
guilt
does
like
arise
.
So
in
therapy
that's
absolutely
something
that
I
work
on
with
folks
.
And
then
also
like
replacing
guilt
with
gratitude
,
because
if
you
think
about
it
,
if
,
like
your
husband's
doing
these
things
for
you
and
you
feel
guilty
,
like
then
he
feels
guilty
or
you
know
,
then
,
like
both
people
start
feeling
bad
.
But
if
you
could
sort
of
replace
the
guilt
with
just
gratitude
,
then
that
feels
good
for
you
to
give
gratitude
and
that
probably
feels
better
for
him
to
receive
it
.
You
know
,
and
then
it
just
like
is
such
a
more
healthy
exchange
of
energy
.
You
know
,
it's
definitely
something
that
can
be
transformed
and
also
something
that
has
been
ingrained
with
us
probably
since
we
were
younger
,
that
feeling
of
guilt
.
Speaker 1
24:59
Absolutely
.
I
agree
with
that
.
Why
is
that
so
second
nature
?
Speaker 2
25:05
I
like
,
come
from
an
Irish
Catholic
background
,
so
I
know
where
my
guilt
is
.
It's
probably
a
part
of
my
culture
,
as
it
is
a
part
of
other
cultures
,
but
yeah
,
but
it
can
be
,
it
can
be
transformed
,
for
sure
.
Speaker 1
25:20
Absolutely
,
and
it
can
be
healed
.
I
think
that
there
is
space
for
that
and
,
as
a
support
person
,
you
have
a
daughter
and
we
don't
have
to
talk
a
lot
about
this
,
but
you
are
a
support
person
.
What
are
some
ways
that
you've
navigated
yourself
walking
through
that
?
Speaker 2
25:36
Yes
,
I
absolutely
encourage
parents
,
as
I
,
like
I
,
have
now
experienced
firsthand
which
is
a
nightmare
,
I
think
,
for
every
endometriosis
patient
.
Their
nightmare
is
that
this
is
something
that
they
pass
on
to
their
children
,
and
just
that
in
of
itself
is
really
difficult
,
right
,
it's
a
worst
case
scenario
it
feels
like
and
you
know
,
I
think
what
I
tried
to
do
,
what
I
encourage
parents
to
do
,
is
to
again
,
like
,
be
active
in
therapy
yourself
,
talk
about
all
of
their
big
emotions
that
come
with
parenting
a
child
with
endometriosis
.
Like
when
you
have
gone
through
it
,
we
hold
a
lot
of
trauma
,
a
lot
of
anxiety
,
a
lot
of
unpleasant
thoughts
,
obviously
,
about
endometriosis
.
Some
of
us
are
still
battling
chronic
pain
or
adenomyosis
or
other
chronic
issues
,
while
now
also
trying
to
take
care
of
a
child
who
has
these
similar
things
.
Speaker 2
26:33
So
,
I
think
for
a
parent
to
be
in
therapy
and
talk
about
how
,
like
,
wow
,
this
is
scary
,
wow
,
this
is
really
sad
,
wow
,
like
I'm
grieving
a
lot
,
like
that
,
this
is
going
on
,
wow
,
I
am
feeling
really
triggered
by
all
of
this
so
that
when
you're
dealing
with
your
child
,
you
can
be
calm
,
you
can
be
regulated
,
you
can
be
supportive
,
you
can
be
grounded
,
you
can
just
sort
of
be
like
the
anchor
that
they
need
to
get
through
this
really
difficult
process
.
Speaker 2
27:03
You
know
,
be
mindful
not
to
pass
on
any
anxiety
,
like
whether
it's
missing
school
,
whether
it's
are
you
going
to
get
your
assignments
in
,
whether
it's
missing
practice
.
Be
clear
that
your
mission
is
I
need
to
be
100%
supportive
and
understanding
,
not
make
them
feel
bad
for
feeling
sick
.
If
you
were
growing
up
with
you
know
like
,
oh
,
just
go
to
school
and
you'll
feel
better
.
It's
like
no
way
you're
feeling
really
sick
right
now
.
So
,
yeah
,
stay
home
,
I
will
fight
for
you
,
like
I
will
send
notes
to
the
principal
.
So
I
think
really
just
staying
regulated
is
incredibly
difficult
and
but
also
like
crucial
to
helping
your
team
navigate
it
.
Speaker 1
27:42
Absolutely
.
I
mean
that's
good
for
me
to
know
,
cause
I
have
two
young
girls
and
the
likelihood
of
them
having
it
it's
increased
Right
Empowering Girls Through Endometriosis Education
Speaker 1
27:50
.
And
so
I
just
recently
went
through
the
puberty
talk
with
my
oldest
,
and
a
lot
of
this
puberty
talk
entailed
endometriosis
and
empowering
her
to
understand
and
have
the
knowledge
,
and
I
think
,
as
a
parent
,
that
will
potentially
not
a
guarantee
walk
through
this
.
I
wanted
to
prepare
her
the
best
I
could
.
I
wanted
to
prepare
her
with
knowing
that
I
was
going
to
support
her
and
advocate
for
her
the
best
I
absolutely
could
For
her
.
Speaker 1
28:20
It
was
interesting
because
I
,
you
know
,
I
talked
about
this
all
day
long
.
We'd
made
a
period
pack
for
her
,
I'd
shown
her
how
to
use
pads
.
I
,
you
know
,
reinforced
that
this
is
nothing
to
be
ashamed
of
,
this
is
nothing
that
you
need
to
be
fearful
of
,
but
that
finding
myself
and
ultimately
my
neighbor
she
was
talking
to
her
about
it
too
but
finding
those
safe
people
to
talk
about
what
you're
going
through
is
so
important
.
And
opening
up
that
dialogue
and
opening
up
that
conversation
to
something
beyond
that
moment
,
I
don't
know
I
think
there's
something
freeing
as
a
person
that
will
potentially
have
to
support
a
child
.
There's
something
freeing
about
opening
that
up
and
being
on
the
same
page
,
and
I
feel
like
I
am
preparing
her
the
best
I
can
without
creating
fear
.
That's
huge
right
.
We
don't
need
any
more
fear
,
but
she
went
to
bed
that
night
and
she
goes
.
Mom
,
thanks
so
much
for
helping
me
prepare
for
this
.
Speaker 2
29:15
And
.
Speaker 1
29:16
I
was
like
stop
it
,
stop
that
right
now
.
But
it
does
make
an
impact
,
even
for
me
,
just
walking
through
my
journey
and
helping
others
do
the
same
.
But
when
it's
a
family
member
,
it's
totally
different
.
I
don't
know
if
you've
ever
experienced
that
where
you're
like
,
just
information
is
power
and
equipping
you
is
so
freeing
.
Speaker 2
29:39
Information
is
power
and
it's
again
like
such
a
generational
shift
.
Whereas
,
you
know
,
I
was
going
through
infertility
and
my
mom
was
like
I
think
you
just
want
it
too
badly
,
like
why
do
you
have
to
look
for
problems
?
Like
things
will
just
work
out
themselves
.
And
I'm
like
why
do
you
have
to
look
for
problems
?
Like
things
will
just
work
out
themselves
.
And
I'm
like
I'm
not
looking
for
problems
,
I'm
having
problems
and
but
it's
just
,
it's
a
whole
.
We
have
two
completely
different
ways
of
tackling
you
know
medical
issues
,
two
completely
different
ways
,
and
there
is
a
culture
of
secrecy
,
a
culture
of
stigma
,
a
culture
of
shame
that
I
didn't
really
want
any
part
of
,
because
of
someone
who
often
has
felt
anxious
.
Speaker 2
30:21
Throughout
my
like
journey
with
endometriosis
and
infertility
and
pregnancy
loss
,
what
I
found
most
empowering
was
education
.
Speaker 2
30:30
You
know
,
and
you
know
folks
may
be
like
why
are
you
telling
your
daughter
about
this
so
young
?
Speaker 2
30:35
Like
at
different
times
,
we've
always
been
open
and
age
appropriate
ways
of
you
know
infertility
,
like
how
she
was
conceived
,
about
endometriosis
,
about
you
know
our
struggles
,
like
to
have
her
and
then
why
she
doesn't
have
any
siblings
,
right
,
like
because
of
our
continued
struggles
.
Speaker 2
30:50
And
then
also
being
open
about
,
like
my
symptoms
and
my
surgery
,
but
none
of
it
scared
her
.
You
know
,
she
it
was
all
because
I
was
very
calm
and
,
like
,
matter
of
fact
,
when
talking
about
it
and
just
again
,
like
I
think
it's
great
like
educating
them
early
about
their
body
,
looking
out
for
different
symptoms
,
you
know
,
like
painful
periods
are
not
normal
,
stomach
issues
are
not
normal
,
pain
with
ovulation
is
not
normal
,
you
know
,
and
so
it
wasn't
.
When
she
had
her
first
painful
period
,
it
wasn't
like
,
oh
goodness
,
like
you
have
endometriosis
.
It
was
more
of
like
,
okay
,
you
know
,
let's
keep
an
eye
on
it
.
And
you
know
,
let's
see
,
keep
listening
to
your
body
,
oh
,
rest
during
this
time
,
and
like
,
oh
,
it
could
be
this
.
You
know
,
I'm
here
to
support
you
,
I'm
here
to
listen
,
so
that
it
sort
of
,
you
know
,
unfolded
in
a
way
that
wasn't
scary
,
in
a
way
that
she
was
informed
,
which
I
think
is
really
important
.
Speaker 1
31:46
Absolutely
.
I
mean
,
I
couldn't
agree
with
that
more
.
I
think
that's
one
of
the
things
that
I'm
really
striving
for
with
my
girls
.
I'm
making
poster
children
out
of
my
children
for
endometriosis
advocacy
.
Because
we
were
talking
about
this
and
I
said
,
lily
,
I
said
you
may
not
have
endometriosis
and
I'm
going
to
be
so
excited
if
you
don't
.
I
told
her
I'm
like
,
you
may
not
,
you
may
be
just
fine
,
I'm
like
,
but
maybe
your
friends
will
and
your
friends
are
missing
school
because
of
their
period
or
your
friends
are
asking
for
pads
or
tampons
all
the
time
and
you
will
have
the
ability
to
say
have
you
ever
considered
endometriosis
?
There's
some
signs
,
here's
some
symptoms
of
how
it
most
commonly
presents
.
Speaker 1
32:28
But
we
went
over
the
whole
thing
and
she's
sitting
there
wide-eyed
,
mama's
a
lot
,
but
I
did
it
as
much
age-appropriate
language
as
I
can
,
you
know
.
But
it
was
interesting
because
she
was
like
I
think
it's
important
we
talk
about
this
mom
.
She
goes
why
do
people
not
want
to
talk
about
it
?
And
I
said
,
well
,
I
think
it's
a
generational
thing
,
I
think
there's
a
lot
to
it
that
people
maybe
feel
uncomfortable
talking
about
.
She's
like
well
,
I'm
gonna
,
I'm
going
to
talk
about
it
.
I
said
,
okay
,
do
that
.
Speaker 1
32:58
But
I
think
the
other
part
of
that
,
too
,
is
that
we've
talked
a
little
bit
about
finding
a
place
to
talk
about
it
and
I
think
community
and
support
communities
and
support
groups
have
so
much
value
and
myself
being
part
of
a
support
group
and
starting
a
nonprofit
with
others
,
it
has
made
a
massive
difference
in
how
I
navigate
endometriosis
,
how
I
navigate
my
post-excision
endometriosis
,
which
is
a
whole
nother
ball
of
wax
,
how
I
navigate
having
hysterectomy
and
going
through
the
hormone
replacement
therapy
and
everything
that
comes
along
with
that
.
It
has
given
me
some
of
my
best
friends
and
I
think
because
there's
that
group
that
validates
where
you've
been
and
where
you're
at
,
understands
it
and
doesn't
hold
you
to
a
standard
that
is
unattainable
in
care
and
the
way
that
you
should
function
,
and
if
you're
tired
one
day
,
it's
okay
that
you're
tired
,
it's
okay
.
Speaker 1
33:55
Can
you
speak
to
what
you've
seen
in
patients
that
are
in
support
groups
,
who
are
in
a
community
to
help
support
them
in
their
journey
?
Speaker 2
34:05
Oh
,
it
makes
a
huge
I
mean
it
makes
a
huge
difference
.
I
run
currently
I'm
running
two
free
support
groups
a
month
,
like
I
have
one
group
that
I
just
run
on
my
own
that
there
are
folks
all
over
the
country
who
are
in
.
And
then
I
just
teamed
up
with
Lhasa
the
Lhasa
app
Margaret
,
who's
awesome
,
and
so
I'm
doing
a
Wednesday
evening
monthly
support
group
through
that
.
That's
also
free
for
patients
.
Impact of Isolation on Chronically Ill
Speaker 2
34:30
My
first
support
group
I
had
,
you
know
,
I've
had
my
appendix
out
.
I
had
to
have
my
gallbladder
out
and
still
hadn't
had
like
a
endo
diagnosis
.
My
RE
did
like
a
really
quick
surgery
that
left
the
majority
of
the
disease
.
You
know
,
and
I
know
a
lot
of
patients
can
understand
that
.
And
I
still
was
feeling
sicker
and
sicker
,
and
sicker
and
I
just
wasn't
well
.
So
I
started
Googling
and
I
found
Jill
from
Endo
Warriors
in
New
York
City
.
Like
had
started
a
support
group
,
one
of
the
original
like
Endo
Warriors
meetings
,
and
it
was
in
her
apartment
in
New
York
City
.
And
like
I
didn't
know
Jill
,
I
don't
usually
show
up
to
apartments
in
New
York
City
.
Like
a
lifelong
New
Yorker
,
that's
not
usually
something
you
do
is
like
show
up
to
an
apartment
you
found
on
the
internet
and
knock
on
the
door
,
but
I
was
so
desperate
for
support
and
guidance
and
resources
that
I'm
like
all
right
,
here
we
go
.
Like
this
is
against
my
better
judgment
,
but
we're
gonna
.
We're
gonna
do
this
.
And
I
showed
up
in
Jill's
apartment
.
She
opened
the
door
and
April
Christina
,
who
is
an
amazing
advocate
and
has
been
an
advocate
she's
on
and
really
has
done
so
many
things
for
his
community
she
showed
up
and
it
was
the
three
of
us
in
the
apartment
and
they
were
the
first
people
I'd
ever
met
with
endometriosis
,
the
first
people
I
connected
with
,
and
it
was
incredible
like
to
sit
with
them
and
to
hear
about
their
gastrointestinal
issues
,
about
their
chronic
fatigue
,
about
how
they
get
up
in
the
night
to
like
urinate
as
well
.
We
shared
our
stories
and
our
pain
and
it
changed
my
life
.
And
then
from
then
on
,
I
started
a
group
,
like
in
Westchester
.
Speaker 2
36:07
I've
lived
in
Yonkers
and
so
for
myself
it
made
all
the
difference
being
connected
and
then
the
support
groups
I've
ran
over
the
years
,
especially
now
I
find
,
post
COVID
too
,
that
people
are
even
more
isolated
.
So
endometriosis
patients
,
who
are
isolated
in
general
,
are
even
more
isolated
.
A
lot
of
them
also
,
if
they're
lucky
,
have
worked
from
home
jobs
,
where
they're
not
really
in
an
office
,
like
connecting
with
others
,
connecting
with
people
.
So
I
feel
like
the
loneliness
that
patients
face
is
even
more
pronounced
,
somehow
,
than
before
.
So
having
them
connect
with
others
has
been
life
changing
,
and
just
being
able
to
sit
in
a
group
and
not
have
people
invalidate
you
,
not
have
people
like
dismiss
you
,
actually
have
people
say
,
oh
goodness
,
I
know
exactly
what
you're
saying
Just
really
can
cut
the
edge
off
of
the
isolation
and
the
loneliness
and
just
make
you
feel
connected
In
your
experience
.
Speaker 1
37:06
What's
the
impact
of
isolation
on
chronically
ill
people
?
I
can
only
imagine
it's
not
only
a
physical
impact
,
but
emotional
,
mental
impact
.
What's
been
your
experience
with
that
?
Speaker 2
37:17
Yeah
,
I
mean
,
I
think
it
absolutely
can
increase
anxiety
because
,
especially
for
folks
who
are
living
alone
,
it's
like
what
if
I
pass
out
?
What
if
I'm
too
sick
to
get
to
a
doctor
?
So
I
think
there's
an
increase
in
anxiety
that
can
happen
.
And
then
I
also
think
the
lack
of
social
connection
can
also
increase
depression
,
and
to
feel
like
you're
all
alone
in
the
world
absolutely
can
make
a
patient
feel
more
depressed
.
Speaker 1
37:45
Yeah
,
I've
experienced
that
as
well
,
in
moments
where
,
in
really
the
beginning
stages
of
my
journey
,
I
felt
very
isolated
,
and
part
of
that
was
because
I
went
to
a
provider
who
made
it
sound
like
it
was
a
very
rare
thing
to
have
endometriosis
.
Behold
,
it
is
not
.
We
all
know
that
,
right
,
we
know
it
is
not
rare
,
but
that
was
the
feeling
that
I
was
given
and
it
felt
very
isolating
in
those
moments
of
like
.
I
have
this
rare
disease
that
no
one
understands
.
There's
not
research
behind
it
which
is
valid
,
but
it's
very
isolating
when
someone
puts
it
like
that
.
Speaker 1
38:23
I
was
recently
married
and
then
had
a
miscarriage
and
then
a
kidney
stone
which
led
to
my
diagnosis
.
And
when
you
are
going
through
a
lot
of
different
changes
in
life
and
then
you're
handed
another
diagnosis
or
handed
something
else
you
have
to
navigate
.
The
isolation
plays
a
part
in
how
I
feel
,
because
I
think
it
exacerbated
this
feeling
of
sickness
in
my
body
and
it
was
harder
for
me
to
cope
,
which
then
turned
into
a
cycle
of
depression
.
But
the
depression
manifested
in
my
inner
thoughts
,
it
manifested
in
the
quiet
moments
and
the
isolation
would
just
perpetuate
that
even
more
.
And
so
,
like
when
we're
talking
about
support
,
and
we're
talking
about
support
meetings
.
I
think
it's
important
to
find
a
group
that
makes
you
feel
less
isolated
and
I
can
guarantee
if
you
find
an
endometriosis
support
group
that's
legitimately
there
to
support
you
,
you
won't
feel
isolated
the
instant
you
walk
in
.
Speaker 2
39:25
I'm
so
sorry
for
your
loss
and
when
I
heard
you
speaking
about
your
pregnancy
loss
and
then
kidney
stone
and
then
diagnosis
like
that
is
your
pregnancy
loss
and
then
kidney
stone
,
and
then
diagnosis
like
that
is
major
trauma
and
like
like
so
many
things
right
there
,
like
a
lot
of
pain
and
there's
so
much
that
we
as
endometriosis
patients
have
to
grieve
.
There's
so
much
grieving
that
goes
on
on
so
many
different
levels
and
doing
that
in
community
can
be
helpful
.
And
then
also
those
inner
repetitive
thoughts
and
that
often
is
anxiety
right
Like
those
sort
of
,
like
you
know
,
repetitive
thoughts
that
keep
coming
,
like
is
this
ever
going
to
get
better
?
Am
I
ever
going
to
feel
better
?
Am
I
ever
going
to
be
able
to
feel
normal
again
?
Am
I
going
to
be
able
to
have
a
baby
?
What
is
my
life
going
to
look
like
?
Speaker 2
40:11
You
know
I'm
working
with
folks
who
had
to
change
jobs
because
they
just
can't
work
,
you
know
,
on
their
feet
.
So
there's
just
so
many
things
that
endopatients
have
to
adapt
to
and
part
of
the
adapting
process
is
grieving
that
you
have
to
adapt
in
the
first
place
,
which
is
really
difficult
,
and
there
are
.
You
know
Peach
Corpse
is
doing
like
a
great
job
with
support
groups
and
the
Endometriosis
Coalition
has
the
monthly
support
group
.
Speaker 1
40:38
There
are
a
lot
of
like
really
great
groups
out
there
right
now
and
a
lot
of
different
opportunities
for
folks
to
get
support
Absolutely
,
and
I
do
think
that
it's
important
that
,
when
you're
finding
a
support
group
,
that
it
is
founded
and
based
in
facts
and
good
,
informative
information
,
because
I
think
that's
something
that
could
be
very
misleading
as
well
,
as
,
if
you
don't
have
a
support
group
that
has
a
good
foundation
,
it
could
lead
to
further
trauma
.
Speaker 2
41:08
Oh
yes
,
oh
yes
,
for
sure
.
I
was
just
working
with
a
patient
.
She
found
an
online
support
group
for
she
had
a
pregnancy
loss
that
was
pretty
advanced
,
which
was
devastating
,
and
someone
in
the
group
told
her
it
was
her
fault
that
it
happened
,
but
which
talking
about
like
adding
to
trauma
,
and
you
know
the
feelings
of
guilt
she
was
already
feeling
which
there
is
no
reason
right
,
like
it
just
happened
,
so
yeah
,
and
and
also
like
bad
information
is
out
there
too
,
so
it
can
be
a
nightmare
if
you
stumble
upon
like
a
wrong
group
,
absolutely
.
Speaker 1
41:43
And
I
do
think
part
of
that
,
too
,
that
is
helpful
is
finding
purpose
within
the
support
groups
.
Part
of
being
in
a
community
is
doing
things
together
,
and
so
if
you're
not
sure
where
your
advocacy
lies
,
I
think
it's
important
to
understand
that
we
need
you
.
If
you
don't
want
to
be
the
face
of
advocacy
,
we're
still
going
to
need
you
to
help
,
support
us
and
lift
us
up
,
and
that
is
sometimes
the
greatest
support
you
can
give
,
and
some
of
the
best
advocacy
are
supporting
those
who
maybe
have
a
face
of
advocacy
.
You
know
you're
putting
yourself
out
there
.
It's
hard
when
you're
in
support
groups
sometimes
to
do
it
all
because
you're
passionate
about
it
.
So
I
encourage
people
to
step
alongside
those
who
are
doing
these
groups
and
become
part
of
that
and
belong
in
that
group
,
because
that
is
healing
to
be
,
long
.
Speaker 1
42:32
For
sure
you
know
and
be
part
of
something
.
Speaker 2
42:34
Absolutely
.
We
talk
about
in
our
groups
that
.
You
know
there
are
many
ways
to
advocate
Like
.
A
lot
of
us
are
really
in
crisis
.
Speaker 2
42:41
I
really
feel
like
when
you
are
in
tremendous
amount
of
pain
with
endometriosis
,
if
you
are
feeling
really
unwell
like
and
struggling
to
get
care
,
you
are
100%
in
crisis
.
Same
way
,
if
you're
going
through
infertility
and
pregnancy
loss
,
you
are
100%
in
crisis
.
And
I
think
what's
really
challenging
is
,
with
something
like
endometriosis
,
you
don't
know
how
long
you're
going
to
be
in
crisis
for
right
Like
.
You
don't
know
.
Like
in
that
it's
exhausting
and
it's
but
you
can
feel
empowered
,
connecting
with
others
right
and
advocating
in
your
own
way
.
Speaker 2
43:12
So
we
talk
about
like
even
if
you
are
looking
on
your
local
group
,
like
Wilmington
,
I
have
one
patient
who's
so
wonderful
and
part
of
her
advocacy
is
whenever
endometri
up
in
our
city's
group
,
she
like
puts
really
good
resources
and
directs
folks
.
You
know
advocacy
is
like
if
you
have
a
friend
who's
having
issues
,
you
know
sharing
like
what
resources
have
helped
you
,
or
like
it's
joining
groups
or
it's
connecting
with
your
local
nonprofit
and
I
agree
with
you
about
not
reinventing
the
wheel
nonprofit
.
And
I
agree
with
you
about
not
reinventing
the
wheel
.
I
feel
like
someone
who's
really
mentored
me
and
who
is
wonderful
.
Um
,
there
would
own
from
you
know
the
center
of
endometriosis
care
.
She's
just
amazing
.
Speaker 2
43:53
I
feel
like
you
can't
,
you
can't
even
talk
about
advocacy
,
really
like
without
talking
about
her
,
and
she's
taught
me
everything
I
know
she
taught
me
that
Power in Purpose
Speaker 2
44:01
too
.
Like
,
don't
don't
start
something
new
if
it
already
exists
.
Don't
reinvent
the
wheel
.
There's
power
in
numbers
and
you
know
you
know
support
folks
who
are
already
doing
great
work
If
you
don't
have
something
new
to
bring
to
the
table
,
which
is
really
,
I
think
,
such
an
important
point
that
you
know
you
brought
up
as
well
.
Speaker 1
44:20
Yeah
,
it's
been
really
impactful
for
a
lot
of
people
who
feel
like
they
don't
have
the
time
to
,
or
the
capability
or
the
health
to
be
able
to
give
as
much
as
they
want
.
But
doing
a
little
bit
makes
them
feel
better
too
.
They
feel
like
they're
part
of
something
and
that's
healing
.
And
it's
so
good
for
depression
and
anxiety
to
feel
like
you
have
purpose
,
and
I
don't
know
.
Speaker 1
44:42
I
think
maybe
that
should
be
our
talking
point
is
finding
the
purpose
in
our
pain
and
and
there
is
purpose
in
this
pain
,
even
if
we
don't
understand
it
and
we
can
be
mad
at
it
.
And
,
like
you
said
,
we
can
grieve
what
we've
gone
through
,
what
we're
going
through
,
what
we
have
potentially
coming
our
way
in
the
future
.
And
I
think
grieving
is
a
big
part
of
that
.
But
purpose
is
another
part
of
that
.
And
and
putting
our
pain
into
purpose
,
that's
how
I
function
.
Not
everyone's
probably
going
to
do
that
and
not
everyone's
comfortable
with
that
,
but
I
do
find
that
there's
healing
when
I
do
that
.
Speaker 2
45:14
Yeah
,
I
always
say
too
which
I
think
is
the
same
vibe
or
feeling
is
like
you
know
there's
so
many
things
that
endometriosis
takes
away
like
and
there
are
so
many
things
out
of
our
control
.
So
I
found
that
advocacy
has
made
me
take
some
of
my
power
back
.
Endometriosis
,
it
feels
sometimes
it
like
steals
all
of
your
power
.
So
I
found
that
advocacy
and
being
a
part
of
the
community
trying
to
help
in
whatever
way
I
can
,
gives
me
some
of
my
power
back
,
makes
me
feel
more
in
control
of
things
you
know
that
really
I
don't
have
control
over
.
So
I
think
that's
sort
of
really
why
I
first
started
doing
advocacy
work
in
the
infertility
community
before
I
really
understood
endometriosis
and
you
know
how
it
impacted
me
fully
.
I
did
a
lot
of
work
with
resolve
and
infertility
is
another
thing
that
makes
you
feel
like
you
have
no
power
,
like
you
have
no
control
,
so
that
it
really
was
very
empowering
to
and
healing
to
take
control
of
trying
to
make
things
better
for
sure
.
Speaker 1
46:19
Yeah
,
oh
,
that's
so
good
.
I
feel
like
we
could
probably
talk
for
hours
because
there's
so
much
to
cover
when
it
comes
to
mental
health
and
when
it
comes
to
advocacy
,
endometriosis
,
you
name
it
.
We
could
talk
for
hours
because
that's
what
us
,
as
endometriosis
advocates
and
patients
,
do
.
But
you
are
such
a
wealth
of
knowledge
and
if
someone
needs
support
and
help
and
they've
connected
with
you
,
is
there
a
way
that
they
can
connect
with
you
outside
of
this
platform
?
Speaker 2
46:50
Yeah
,
absolutely
.
My
website
is
wwwkcbernacom
and
on
my
website
there's
a
ton
of
my
favorite
resources
.
I
have
to
update
it
because
I
haven't
updated
it
in
like
two
years
,
maybe
three
years
,
maybe
longer
,
but
there
are
definitely
a
bunch
of
resources
on
there
that
are
free
that
patients
you
know
if
they
want
to
sort
of
understand
more
about
endometriosis
.
I
also
did
sort
of
like
a
video
this
was
now
goodness
,
like
six
,
seven
years
ago
now
on
like
infertile
endometriosis
,
infertility
and
impact
on
mental
health
.
So
again
,
it's
free
.
It's
on
YouTube
.
Folks
can
watch
it
.
There
is
a
husband
on
there
who
talks
about
it
as
well
.
So
reach
me
through
my
website
or
you
know
my
address
or
I'm
on
Instagram
.
I'm
endo
social
worker
.
Speaker 1
47:37
Perfect
.
What
are
some
nuggets
of
wisdom
that
have
really
helped
carry
you
through
this
journey
that
could
help
impact
other
people's
journey
?
Speaker 2
47:46
Yeah
,
I
mean
I
just
want
to
validate
the
pain
that
folks
are
feeling
.
I
want
to
validate
the
sadness
and
the
grief
that
they're
feeling
and
that
validate
this
is
incredibly
,
incredibly
difficult
.
Endometriosis
is
a
really
challenging
disease
that
often
comes
with
other
comorbidities
,
like
in
other
chronic
illnesses
,
and
that
it's
really
hard
.
And
so
I
want
to
validate
that
and
also
say
that
going
to
see
a
mental
health
provider
can
absolutely
help
with
the
anxiety
and
depression
.
Like
,
obviously
,
there
are
no
quick
fixes
to
endometriosis
or
the
chronic
illnesses
that
come
along
with
it
,
but
talking
to
a
mental
health
provider
can
absolutely
help
lift
some
of
the
anxiety
and
depression
that's
going
on
.
Connecting
with
others
in
the
community
who
understand
what
you're
going
through
can
be
so
validating
and
reassuring
and
that
I
see
and
feel
like
other
people
are
going
through
and
know
how
difficult
it
is
.
Speaker 1
48:47
Yeah
,
oh
,
that's
so
encouraging
to
hear
and
if
you're
really
struggling
,
there
are
resources
out
there
,
there's
helplines
out
there
.
I
want
to
encourage
anyone
that's
walking
through
this
journey
to
not
do
it
alone
,
because
it's
a
very
isolating
journey
to
be
on
and
,
like
we
said
before
,
isolation
breeds
depression
and
anxiety
a
lot
of
times
.
So
I
encourage
you
to
just
reach
out
to
someone
.
Speaker 2
49:10
Yes
,
and
there's
importantly
,
like
and
if
you're
,
if
you
are
having
suicidal
thoughts
which
the
BBC
did
a
survey
and
I
think
it
was
more
than
half
like
of
endometriosis
patients
that
they
surveyed
have
had
those
thoughts
before
that
there
is
a
suicide
and
crisis
lifeline
.
You
know
you
can
go
and
like
call
that
and
then
there'll
be
like
someone
or
you
could
text
like
if
you're
feeling
extremely
depressed
.
You
know
it's
988
lifelineorg
.
You
could
go
there
and
get
immediate
help
and
support
If
that's
something
like
that
you're
struggling
with
.
Speaker 1
49:43
Yeah
,
that's
excellent
.
So
thank
you
for
bringing
that
to
the
table
.
Thank
you
,
casey
,
for
coming
and
joining
me
today
and
just
sharing
your
wisdom
and
your
compassion
and
your
passion
for
endometriosis
patients
and
the
support
people
.
I
feel
so
refreshed
after
talking
to
you
and
validated
and
part
of
my
journey
and
what
many
people
go
through
.
So
thank
you
for
taking
the
time
,
thank
you
for
having
the
heart
to
do
this
and
put
yourself
out
there
and
work
tirelessly
on
the
advocacy
front
,
because
we
need
more
people
like
you
to
help
lift
us
up
.
So
thank
you
.
Speaker 2
50:21
Oh
,
that's
so
kind
.
Thank
you
so
much
again
for
having
me
.
It
was
such
an
honor
to
chat
with
you
and
thank
you
for
all
you
do
to
make
our
community
better
.
Speaker 1
50:29
Absolutely
.
I'm
so
happy
to
do
it
Well
,
until
next
time
.
Everyone
continue
advocating
for
you
and
for
those
that
you
love
.