Living with Vitiligo
[Music]
[Laughter]
[Applause]
so
there’s this thing that happens to me
fairly often
uh when i’m around young kids especially
during the summer
when i’m not covered up by like 12
layers of clothing
where a kid will stop what they’re doing
and they’ll look at my
arms and my hands and my face
and they’ll ask me why is there skin
like that
and i’ll tell them that my body gets
confused
and it makes white patches on my skin it
doesn’t hurt and it’s not contagious
and then if i still have their attention
i might throw in
i think there are lots of ways our
bodies and minds are similar
and there’s ways that we’re all
different and then usually the kids like
okay and goes back to playing
and i’ve come to appreciate these
moments although they used to catch me
off guard
i appreciate the kids are naturally
curious
they integrate this new information i’ve
given them
and then they move on and so i think
there’s a
teachable moment in there for both of us
about
curiosity acceptance and moving on
so tonight i’m going to be talking about
my experience living with vitiligo
i’m going to be talking about some of
the lessons it’s taught me
and the challenges i’ve experienced in
learning to accept my body and my
visible difference
and i hope to help all of us think about
how we might practice accepting our
bodies
and the differences between us
so here’s what you need to know about
vitiligo it’s an autoimmune condition
in which the immune system mistakenly
attacks the cells that produce skin
pigment
so that people develop white patches on
their skin
and this happens most often on parts of
the body that get a lot of sun exposure
like the face
and the neck and the hands it impacts
one percent of the global population
including people of all races
ethnicities genders and ages
although it’s more visible on people
with darker skin
and it can show up in childhood or young
adulthood
but it also can appear for people at any
age
doctors believe that there is often a
hereditary component and that it can be
triggered by stressors or by
environmental conditions
and there’s currently no cure treatment
options include the use of medication
light therapy and skin grafting and
these options can be
expensive time consuming painful
and only somewhat effective and some
people with advanced vitiligo like
michael jackson for instance choose to
take a medication
to remove the skin pigment from their
entire body so that they no longer have
spots
the most difficult aspect of living with
this condition
is the profound emotional distress that
people can experience
due to having a visible difference
people often experience
stares rejection name calling
teasing and this this social stigma can
really impact people’s mental health
and people might suffer from low
self-esteem
anxiety or depression and leading some
people to even contemplate suicide
you know i’ve heard stories of people
who work the night shift
so as not to be seen by others or people
who worry that they won’t find a partner
or a good job due to their visible
difference
and in some cultures vitiligo is seen as
being similar to leprosy
so i developed vitiligo in my early 20s
when a white patch appeared on my left
eyelid
and my friends would ask is that a burn
mark or a scar
and i had no idea and it wasn’t until
the spots showed up on other parts of my
face and hands that i finally went and
got
diagnosed by a dermatologist and i
remember her saying
that you know the spots could remain
localized or they could spread to my
entire body and that there was nothing
i could do about it so you might imagine
how i felt in that appointment
and they my spots generally remain
localized until i was in my 30s and i
gave birth to two awesome children
and during both postpartum periods my
pigment loss spread rapidly to my neck
my arms my legs hips my feet
and i was so excited and exhausted
and busy with new parenthood that i
really didn’t have a lot of mental or
emotional capacity to focus too much on
it
although i do remember feeling sad and
anxious about my rapidly disappearing
pigment
and so even with this
you know i feel like i have a lot of
privilege as someone living with this
condition
i developed it as an adult in my 30s
when i already had a wonderful partner
and a family and a career i loved
as a caucasian person my spots are not
as visible
as they are for people of color and i
think this has very real implications
for how stigmatized i
am i also have socioeconomic security
and health insurance
which means i’ve always had access to
doctors and dermatologists and mental
health providers
on the other hand as a woman in our
culture i’m keenly aware
of the pressures to be attractive and
put together i understand the ways in
which
women’s appearance is judged and
criticized more harshly than men’s
and that women have to sort through a
lot of
powerful cultural expectations about
beauty
and self-worth so
given all of this you know it’s been a
challenge for me to live with this
condition
i remember one moment
about five years ago after my family and
i had moved into a new community
and it was early spring it was like one
of those first warm days where
everybody’s so excited especially here
in new england
and i was standing in my bathroom and i
was looking in the mirror
and i was looking at my spots and i was
feeling really self-conscious
you know i was thinking about oh should
i cover up so that i don’t stand
out and i knew on some level
that covering up wouldn’t work for me
that i wanted to be out in the sun
i wanted to feel the sun in my arms and
be outside and play with my kids
and so i stood there and it’s like this
little voice inside was like
no i’m not going to cover up
i’m going to choose to be who i am and
live in the body that i have
and i’m going to say no to shame
and worry and self-consciousness
so i had this moment of insight of sort
of realization and commitment to myself
but then i had to put that into action i
had to work at it
it didn’t just happen right so i did a
number of things one thing that i had to
really focus on was
wearing clothes that i liked but that
weren’t about covering up
so you know i wore things that showed my
spots to work or when i was out doing
errands
and i practiced sitting with the
discomfort of that
of sort of ignoring people’s looks or
reactions
which i found got easier over time
and that people maybe when they
initially got to know me they might you
know glance
at my skin but those looks and glances
really stopped
and i think i listened to the rebellious
part of me that didn’t want anybody else
to tell me how to think or feel about my
body
it also felt empowering to tell loved
ones that i was not
choosing to pursue treatment at this
time that i was really practicing
accepting my spots
something else i had to do was i had to
stop looking at myself and criticizing
my spots in the mirror
i had to notice when i was doing that
and i would have to tell myself to stop
i would practice being kinder towards
myself
noticing what i did like about my
appearance or if that whole like
accepting the body thing was too hard
i would think about what i had to do at
work that day or what i was making for
dinner that night
um you know sometimes i had to take a
tough love approach if i was feeling
really self-pitying
i’d be like it’s not cancer
how you look is not as important as who
you are
i also
had to think about
my body as the vehicle through which i
experienced my
everyday life that the body’s not just
about looks the body’s really how we
experience the joys and pleasures of
life
you know i practice noticing the the
beauty of hugging my children
or going on a walk in the woods with my
dog or eating a delicious meal
and i also thought about my body in a
more spiritual sense
as my connection to my ancestors and to
my children
and that the body teaches us about inner
connection
and it teaches us about joy and
suffering
and change and that you know it reminds
me of my ultimate lack of control
despite my best efforts to manage all
the details
all the time
and so given this work
you know i think in some ways i make it
sound easy but it took me
years of practice and effort and
intention
to shift my relationship to my
appearance
you know even after doing this work i
could still find myself
looking at my friend’s perfect skin with
envy or seeing an old photo of myself
before i had vitiligo and feeling kind
of sad and betrayed by my body
and i realized that i still needed to do
some work
i still needed to challenge oppressive
cultural beliefs
that some bodies are more worthy or
acceptable or attractive than others
you know there’s so many ways to have
and live in a body and so i sought out
images of other people with vitiligo or
other forms of visible difference
and i practiced seeing the beauty and
uniqueness in them
and i really had to think about my
belief
that all bodies are good bodies
and so at this point in my life the
vitiligo is not something i think about
on a regular basis
it doesn’t hold me back for what i want
to do or accomplish
and i’ve actually really appreciated
some of the lessons it’s taught me
and the opportunity to connect with
other people that have similar
experiences
and so i just want to take this moment
to send a lot of love to everybody to
the
millions of people living with vitiligo
you know i encourage you to take care of
yourselves in whatever way feels right
for you
i urge you to practice compassion for
yourself
and take pride in who you are spots and
all
whether you choose to accept them
treat them cover them up or show them
off
and for those of you without vitiligo i
ask
i ask you to educate yourself about it
or about any other condition that
creates visible differences for others
like alopecia or ichthyosis
i ask you not to stare or ask intrusive
questions
but to listen deeply if someone shares
their experience with you
no one wants to be pitied and we can’t
assume we understand someone else’s
relationship to their own body
and i really think it’s on all of us to
challenge oppressive cultural beliefs
about bodies
about which bodies are more acceptable
or worthy or attractive than others
i think you know it’s incredibly harmful
that some bodies are considered normal
and some aren’t
and that it’s really on all of us to
create communities of respect
in which all people feel seen and safe
and valued
and so i’ve appreciated some of the
lessons that vitiligo has kind of forced
me to learn
right it’s really made me get real with
myself
about how i want to relate to my body to
ask myself
how do i want to live in a body right
now
can i relate to it with greater
compassion and acceptance
or will i allow myself to be stuck in
shame
and can i challenge oppressive cultural
beliefs and biases
about appearance
and so all of this i think has helped me
to become a stronger person
and it’s helped me develop empathy and
greater courage
and so i think that the next time a
kiddo asks me
why is there skin like that that i’m
gonna tell them that i have vitiligo
and it’s my superpower
thank you
you