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