►
Description
Presented by Jamie Strusz, GitHub.
Invisible diseases (mental health conditions, neurologic disease, rheumatic disease, etc.) are harder to identify, vary widely, and are often misunderstood and stigmatized. As someone with Young Onset Parkinson's Disease, I'm personally familiar with how my working conditions, the attitudes of my colleagues, and my ability to disclose has affected the course of my disease. The theme of this talk is about how an empathetic, positive, and flexible work atmosphere is beneficial for people living with chronic disease, based on my personal account. Being productive and thriving at GitHub despite having Young Onset Parkinson's Disease has largely depended on working with empathetic people, but also the ability to work remotely, flexibility, and ultimately feel supported enough to disclose to those I work with. Companies can foster an atmosphere of trust that allows those dealing with chronic illness to self care, whether they choose to disclose or not.
About GitHub Universe:
GitHub Universe is a two-day conference dedicated to the creativity and curiosity of the largest software community in the world. Sessions cover topics from team culture to open source software across industries and technologies.
For more information on GitHub Universe, check the website:
https://githubuniverse.com
A
A
A
This
is
my
agenda
for
today,
I'm
going
to
talk
about
what
an
invisible
disease
actually
is.
Then
I'll
talk
about
what
my
disease
is
and
how
I
managed
to
work
with
it.
I
also
want
to
cover
how
companies
can
create
a
more
inclusive
work
environment,
how
individuals
can
be
supportive
to
co-workers
with
an
invisible
disease,
and
then,
lastly,
I
want
to
talk
about
how
this
can
benefit
everybody
regardless.
A
A
Some
examples
include
mental
health
conditions
like
anxiety
and
panic
disorders,
depression,
bipolar
disorder,
ADHD,
neurologic
disease
like
multiple
cirrhosis,
epilepsy,
migraines
and
Parkinson's
disease,
rheumatic
disease
like
fibromyalgia,
lupus
rheumatoid,
arthritis
or
slow
derma,
and
one
thing
that
they
all
have
in
common
is
that
they're
harder
to
identify.
They
vary
widely
and
they're,
often
misunderstood
and
stigmatized
a
lot
of
times.
A
But
let
me
talk
about
my
disease
and
how
I
work
with
it.
So
when
you
look
at
me,
can
you
tell
that
I'm
sick
other
than
the
fact
that
I
did
indeed
roll
in
here
in
a
wheelchair
and
used
crutches
to
get
on
stage
which
I
swear
is
unrelated?
I
just
had
knee
surgery,
but
otherwise
I
look
pretty
normal,
but
I
actually
have
young
onset.
Parkinson's
disease
I
was
diagnosed
when
I
was
26
and
my
symptoms
started
when
I
was
about
18
years
old,
and
these
are
some
of
my
most
common
reactions.
A
Isn't
that
what
Michael
J
Fox
has
yep
but
you're,
so
young
I
know
if
I
could
I
wish
that
Parkinson's
would
age
discriminate,
but
that's
not
the
case.
Does
that
mean
that
you
shake
not
necessarily
a
lot
of
people?
Don't
really
know
what
Parkinson's
is
so
I'd
like
to
go
ahead
and
tell
you
it's
a
progressive
degenerative
brain
disease
and
it
affects
muscle
movement.
A
The
young
onset
designation
means
that
you're
less
than
50
when
you're
diagnosed
and
young
onset
Parkinson's
disease
is
a
little
bit
different
from
what
is
called
traditional
Parkinson's
disease.
Some
symptoms
are
less
common.
Some
symptoms
are
more
common
and
in
both
cases
invisible
symptoms
like
depression.
Can
start
years
before
your
physical
symptoms
are
even
seen
and
all
of
the
people
that
I've
just
shown
you
have
had
or
have
Parkinson's
disease.
A
A
Just
imagine
your
toes
spreading
out
and
curling
under
like
claws
for
hours
at
a
time,
and
there
is
nothing
that
you
can
do
about
it
and
imagine
having
a
cramp
or
a
charley
horse
in
your
calf
magnify
that
by
10
and
that's
a
day-to-day
thing
for
me
and
imagine
not
being
able
to
write
because
you
have
a
hard
time
holding
a
pen
or
pencil
or
not
being
able
to
open
a
bottle
of
water.
I
also
experience
something
called
rigidity,
and
that
just
means
that
I
have
stiffness
and
decreased
muscle
range.
A
lot
of
the
time.
A
So
imagine,
like
your
body,
is
just
slowly
turning
into
stone
and
then
imagine
trying
to
go
up
or
down
stairs
when
you're.
Turning
to
stone,
I
also
experience
something:
that's
called
REM
sleep
disorder,
which
means
that
my
body
isn't
paralyzed
while
I
sleep
most
people
when
they
sleep,
they
have
no
movement,
but
for
me,
I
act
out
my
dreams
so
because
my
body
never
actually
gets
to
rest.
It
never
really
heals
so
I'm,
always
tired
and
I'm,
always
fatigued
and
I'm,
always
sore
I.
A
A
None
of
this
means
that
I
can't
be
an
engineer.
So
I
want
to
tell
you
about
how
I
may
my
disease
for
my
treatment
I
get
monthly
acupuncture
I
get
by
weekly,
massage
and
I
exercise
a
lot
and
when
I
say
a
lot,
I
mean
a
lot
I
train
for
triathlons
well,
until
I
had
knee
surgery,
I
do
CrossFit
and
I
also
practice.
Yoga
I
also
really
work
hard
to
manage.
My
stress
I
do
a
lot
of
meditation,
deep,
breathing
and
I
just
do
a
lot
of
self-care.
A
There
are
other
treatment
options,
the
main
which
is
medication.
The
majority
of
people
with
Parkinson's
disease.
Do
you
take
medicine?
I
was
on
medicine
for
Parkinson's
years
before
I
was
actually
diagnosed.
That's
part
of
how
they
diagnosed
you
because
there's
no
test,
it's
a
differential
diagnosis,
meaning
they
have
to
rule
everything
else
out.
First
I
decided
to
go
off
my
medications
about
five
years
ago,
because
eventually,
the
main
medicine
used
for
Parkinson's
disease
does
lose.
Its
effectiveness
and
I
was
already
taking
it
five
times
a
day,
which
is
the
top
end
of
the
spectrum.
A
Another
option
is
deep
brain
stimulation,
and
that
is
a
surgery
in
which
they
implant
a
device
behind
your
collarbone
that
sends
an
electrical
signal
up
to
electrodes
planted
in
your
brain
kind
of
like
a
pacemaker
and
that
helps
manage
some
of
the
muscle
issues
that
people
with
Parkinson's
face
again.
I
have
decided
not
to
do
that
yet.
A
So
how
do
I
work
sounds
terrible
right,
well,
I
work,
the
way
that
most
people
do
I
just
happen
to
work
at
github
and
while
my
condition
affects
my
day-to-day
life,
it
typically
doesn't
prohibit
me
from
doing
my
job.
I'm,
really
really
fortunate
to
work
in
the
line
of
work
that
I'm
in
and
also
to
be
at
the
company
that
I'm
at
some
adaptations
that
working
at
github
affords
me.
A
So
if
I
am
especially
tired
or
exhausted
or
tremoring,
I
can
just
put
my
work
down
and
then
pick
it
up
when
I
feel
better
and
then
the
last
thing
is
that
I
feel
comfortable
asking
people
for
help
a
lot
of
people
with
chronic
illness
can
easily
heal
or
be
made
to
feel
incapable,
or
perhaps
burdensome
and
I
have
at
times
myself.
Definitely
but
I
get
hope.
We
talk
a
lot
about
collaboration
and
on
my
team.
A
A
So
I
can't
sit
at
a
desk
for
8
hours
a
day,
I
just
can't
it's
physically
taxing
for
me
and
to
be
fair,
it's
unhealthy
for
most
people
so
to
take
it
further.
I
mentioned
being
uncomfortable
when
I
have
my
legs
down.
If
I
put
my
legs
up
in
an
office
that
usually
sends
a
bad
impression
right,
like
I'm,
relaxing
or
that
I
am
goofing
off
or
I'm,
not
working
hard,
but
that's
not
necessarily
the
case,
and
potentially
you
know
if
I
were
to
need
to
stand
at
a
desk.
A
That
option
might
not
be
available
to
me
when
I
worked
at
a
previous
tech
company,
a
lot
of
people
were
asking
for
standing
desks
and
it
became
cost
prohibitive.
So
they
actually
decided
to
require
medical
documentation,
saying
that
you
really
that
standing
desk
and
that
would
have
required
me
to
disclose
or
give
away
personal
information,
I
wasn't
comfortable
giving
away
so
I
decided
not
to
get
a
standing
desk
also
in
a
traditional
workplace.
There's
no
couches,
usually
there's
no
beds
for
sure.
So
you
can't
have
like
a
comfortable
space
to
work.
A
If
that's
what
your
body
needs
and
a
lot
of
times,
those
traditional
offices
usually
have
people
work,
traditional
hours,
9:00
to
5:00,
and
that
doesn't
work
for
everyone,
and
it
certainly
doesn't
work
for
me
and
most
people
when
they
come
to
conferences
like
this.
By
the
end
of
the
day
tomorrow,
you
might
be
really
tired,
really
exhausted
people
that
just
ready
to
go
home
right.
That's,
basically
how
I
feel
every
day
when
I
have
to
work
in
a
regular
office.
So
just
imagine
that
the
other
thing,
too,
is
if
I
worked
in
a
traditional
office.
A
I
would
actually
have
to
take
time
off
to
go
to
my
appointment,
so
my
monthly
acupuncture
appointments
alone
would
probably
take
off
all
of
my
time.
There's
no
breaks
or
extended
lunches
when
you
need
them.
You
have
to
stick
to
your
schedule
and
for
somebody
like
me
that
just
is
really
undoable.
It's
unfair.
A
So
I
want
to
point
out
that
it
might
sound
terrible
I,
don't
know
it's
normal
for
me,
but
I
actually
have
it
easier
than
a
lot
of
people.
The
majority
of
people
out
there
with
chronic
illness
or
an
invisible
disease
have
a
really
hard
time
finding
jobs
that
work
for
them,
or
they
even
understand
this
I
shouldn't,
have
to
feel
lucky
to
be
treated.
A
This
way,
I
shouldn't
have
to
feel
lucky
that
I
have
a
job
that
understands
that
I'm,
a
productive
worker
that
just
happens
to
have
a
neurologic
disease,
and
this
really
needs
to
be
standard.
There's
a
lot
of
wonderful
people
out
there
who
do
wonderful,
amazing
work,
and
they
just
happen
to
have
a
health
issue
that
you
can't
immediately
see
so
I
would
love
for
every
company
to
understand
this
and
have
the
flexibility
that
allows
all
sorts
of
people
to
be
successful.
A
Working
for
them,
I
found
a
home
at
github
and
disclosing
my
disease
to
my
co-workers
was
really
empowering
for
me.
It's
really
enabled
me
to
put
my
health
first.
That
is
not
the
case
for
most
people,
so
I
want
to
share
how
I
actually
disclosed
my
disease
haven't
actually
told
HR,
yet
I
think
they
know
by
now.
A
The
thing
is:
I:
don't
need
special
accommodations
because
I
have
Parkinson's
disease.
Github
just
has
that
for
everyone,
and
it
happens
to
work
for
me,
I
told
most
of
my
co-workers
that
conversationally,
oh
by
the
way
I
have
Parkinson's
disease
because,
to
be
honest,
I
talk
about
it
a
lot.
It's
probably
annoying.
Oh
and
I
actually
told
my
manager
during
my
interview,
one
because
I
felt
really
comfortable
doing
that.
She's,
a
really
sweet
understanding
person
and
two
I
don't
want
to
work
for
a
company
where
my
disease
would
be
considered
a
problem.
A
So
how
can
companies
create
a
positive
and
inclusive
workspace?
I
want
to
discuss
the
surefire
ways
to
exclude
people
with
invisible
disease.
First
things
like
inflexible
hours
in
person,
requirements
in
moveable
schedules
and
meetings
and
an
inability
to
leave
work
for
those
doctor's
appointments
not
being
able
to
schedule
your
own
breaks
or
rests
having
that
culture
of
more
work
is
better
and
that
attitude
that
the
first
one
in
the
office
and
the
last
one
to
leave,
because
more
but
in
seat
time
doesn't
mean
more
work.
A
Just
as
less
button
seat
doesn't
mean
less
work
and
then
there's
also
the
concept
of
perceived
effort
and
hours
worked.
So
as
an
example,
there's
been
a
study
where
they
found
73
women
with
fibromyalgia
and
73
healthy
women,
and
they
were
matched
by
occupation
and
physical
workload
and
they
were
compared
in
conditions
of
perceived
work
effort.
So
the
people
with
fibromyalgia
found
that
they
self-reported
having
worked
harder
than
the
people
who
are
healthy.
A
Self-Reported,
so
I
would
say
that
I
posit
that
women
with
fibromyalgia,
who
work
in
environments
that
are
flexible
enough
to
allow
them
to
put
their
health
first
would
be
healthier
overall
in
the
long
run
and
that
we
should
make
every
workplace
accommodating
to
individual
lives.
And
if
you
don't
know
what
spoon
theory
is
write
that
down?
Please,
google,
it
later
and
I'm,
also
happy
to
talk
about
it.
So
how
can
we
optimize
options
for
optimal
health?
A
A
There's
also
that
concept
of
work-life
balance.
What
does
that
mean?
Let's
put
people
before
workers,
so
imagine
being
sick
with
the
flu
or
something
and
how
many
of
us
have
tried
to
go
to
work
when
we're
sick,
probably
at
least
once
for
everyone
right.
So
what
if
you
didn't
have
to
what?
If
you
could
stay
home
and
put
your
health
first
and
also
not
infect
your
co-workers,
why
isn't
that
a
thing?
Yet?
Why
isn't
that
standard?
A
A
We
also
get
economic
evaluations.
We
have
a
desk
in
a
chair
budget
and
this
again
is
me
working
from
bed.
That's
my
dog
in
shared
workspaces,
people
can
be
sensitive
to
light
or
sound
temperature,
and
often
there's
no
outside
views,
which
studies
have
shown,
definitely
improves
mental
health.
So
another
thing
is
corporate
culture,
again
we're
people
before
we're
workers.
People
are
individuals
and
we
should
focus
on
how
each
individual
person
can
contribute
to
team
efforts
and
emphasize
each
person's
strengths.
A
So
as
an
example,
my
colleague
Carolyn
didn't
schedule
me
for
any
customer
meetings
today,
so
that
I
could
be
arrested.
To
give
this
talk,
companies
should
also
promote
general
health
and
well-being,
so
like
gym
memberships,
having
relaxing
spaces
for
people
to
work
from
instead
of
just
desks
and
healthy
snacks
and
drinks.
So
Google
did
a
study
where,
if
you
put
the
healthy
snacks
and
drinks
where
people
are
more
likely
to
see
them,
they're
more
likely
to
choose
those
over
the
junk
stuff,
you
want
to
create
a
naturally
adoptive
workplace.
A
A
Everyone
has
something
going
on
that.
Nobody
knows
about
that.
People
can't
see
whether
it's
a
disease,
a
dying
parent,
a
kid
struggling
in
school,
a
divorce
whatever
we
all
have
something
going
on
in
our
lives
that
people
don't
know
about,
and
we
should
collaborate
when
you
collaborate,
you
get
more
ideas
and
you
cover
gaps
and
knowledge.
A
So,
at
workshop
day,
yesterday
Bianca
talked
about
Tori,
but
she
said
a
very
personal
story,
all
in
Spanish
and
then
there
were
some
people
asking
questions
and
they
asked
those
questions
in
Spanish,
and
then
she
told
the
story
in
English
and
the
English
speakers
gave
her
a
completely
different
set
of
questions.
So
when
you
include
more
people,
you
get
a
larger
diversity
in
thought
and
try
and
be
positive.
A
Don't
judge
again,
everybody
has
a
story.
We
don't
need
to
leap
to
conclusions
or
judge
somebody,
because
we
just
don't
know
what's
happening
on
their
end.
And
lastly,
just
don't
gossip
don't
being
talked
about
behind
your
back,
doesn't
feel
good
for
anyone,
especially
people
who
might
have
a
mental
or
physical
health
issue,
especially
if
they
haven't
disclosed
them.
A
A
So
when
people
feel
good
about
themselves,
they're
more
likely
to
take
more
challenges
and
perhaps
do
greater
things,
and
also
that
sense
of
camaraderie,
because
when
you
create
a
sense
of
belonging
and
inclusion,
people
are
going
to
feel
way
more
inclined
to
feel
open
with
each
other
and
build
those
relationships,
and
then,
lastly,
and
sorry,
if
I
get
a
little
sentimental,
I
want
to
say
a
quick.
Thank
you
to
my
work
family.
A
These
are
ways
that
my
co-workers
have
helped
me
a
lot
of
times.
They'll
ask
about
my
health,
which
they
know
is
okay
to
ask
because
they
asked
if
they
could
do
that.
Not
everybody
with
an
invisible
disease
is
going
to
be
okay
with
that.
So,
if
you
know
for
sure
somebody
has
something
going
on,
you
might
ask.
Is
it
okay
if
I
ask
how
you're
doing
and
if
it's
not
they'll
tell
you
it's
not
another
way
is
that
they
can
help
me
with
my
workload,
if
I'm
over
tossed
so
like
getting
ready
for
universe.
A
For
example,
I
was
crunched
for
time
last
week
and
I
threw
a
slack
ping
out
to
see
if
anybody
could
help
me
move
some
slides
from
one
template
to
another.
It
had
nothing
to
do
with
the
fact
that
I
have
Parkinson's
disease
by
everything
to
do
with
the
fact
that
I
had
so
little
bandwidth
and
so
much
to
do,
and
anybody
can
undo
that
on.
My
team
I
mentioned
that
before
anybody,
for
any
reason
can
always
ask
for
help
and
you
never
considered
burdensome,
and
it's
never
a
problem.
A
They're
also
really
accommodating
in
meeting
times.
A
lot
of
times
will
forget
that
oh
I'm,
flying
or
oh
I
said
I'd
meet
with
so-and-so
and
they're
very
flexible,
we're
all
really
flexible,
and
sometimes
that
does
include
doctor's
appointments
or
anything
like
that.
So
they're
really
good
about
rescheduling
things
and
that's
wonderful.
A
This
one's
kind
of
weird,
all
a
bit
they
have
physically
helped
me
walk.
I
mentioned
turning
to
stone
earlier.
Walking
up
stairs
can
be
really
hard,
but
my
team
is
wonderful
and
again
the
last
hey.
Do
you
need
help
I'm
like
yeah
I?
Can
you
help
me
get
up
the
stairs
and
you
know
I'll
have
one
or
two
people
on
either
side
of
me
taking
some
of
my
weight
off,
because
it's
just
hard
to
move
my
legs
and
they'll
actually
partially
carry
me
up
the
stairs
and
I.
Think
that's
really
wonderful
and
I'm.
A
B
A
Other
thing
is
opening
bottles.
I
couldn't
do
this
by
myself.
Somebody
opened
this
for
me.
It's
just
too
small
I
can't
my
handle
cramp
up,
and
then
lastly-
and
this
is
probably
my
favorite-
is
I
just
really
like
hugs
hugs
are
great,
they
relieve
stress
and
actually
in
Buddhist
culture
they
try
to
hug
each
other.
Every
day,
every
single
person
should
get
at
least
one
hug
a
because
it
shows
that
health
effects
are
very
positive
from
just
at
least
one
hug
a
day,
so
I
figure
I,
don't
know
how
many
hugs
have
I
had
today.
A
I
must
be
doing
pretty
good,
so
I
do
want
to
say
that
my
colleagues
are
absolutely
the
most
empathetic
and
collaborative
and
positive
non-judgmental
group
of
people
that
I
have
ever
had
the
privilege
to
work
with.
I
have
never
had
this
before,
and
maybe
that's
why
I've
never
disclosed
my
disease,
so
I
would
like
to
thank
them
there.
They
all
are,
and
if
there
is
anything
that
you
all
take
away
from
this
talk,
I
have
a
tldr
for
you.
A
Strive
to
be
the
kind
of
business
that
puts
humans
first
and
be
the
best
possible
person
you
can
be
and
chances
are,
you
will
be
a
good
co-worker,
a
github.
We
have
a
really
strong
mindset
for
community
and
for
collaboration
and
I
want
to
see
more
places.
Strive
for
that
I
want
to
see
more
places,
strive
to
make
it
easier
to
work
a
synchronously
to
allow
for
that
flexibility
and
to
allow
for
that
inclusion.
A
And
this
is
the
last
final
thought:
if
you
are
out
there
and
you
have
an
invisible
disease,
it's
ultimately
up
to
you
whether
you
want
to
tell
people
or
not.
It
actually
took
me
a
really
long
time
to
even
tell
my
family
I
think
I
waited
almost
two
years.
That's
a
really
really
long
time
to
struggle
by
yourself,
but
it's
up
to
you
to
decide
how
you
want
to
do
it.
A
A
There's
a
lot
of
people
out
there
who
really
really
want
to
work,
but
they
can't
find
the
places
to
do
it.
So
the
more
places
that
have
better
work
ability
for
people
with
invisible
diseases
like
mine,
you're,
gonna,
open
up
your
candidate
pool
you're,
going
to
get
a
lot
of
really
great
workers
who
are
just
looking
for
the
right
place
that
allows
them
to
put
themselves
and
their
health
first,
because
it's
really
really
hard
to
work.
When
you
don't
feel
great
I
did
finish
early
I
apologize.
I
was
really
nervous
to
give
this
talk.
A
I
talk
at
stages
all
the
time,
but
it's
always
about
technology,
and
this
is
the
first
time
I'm
actually
talking
about
myself.
So
it
was
weird,
but
thank
you
for
coming.
I
really
appreciate
it
again.
My
name
is
Jamie.
You
can
find
me
up
in
Seattle
on
github
and
all
the
internet
at
all
the
Dahle.
Thank
you.