How I help people understand vitiligo

TV news anchor Lee Thomas thought his career was over after he was diagnosed with vitiligo, an autoimmune disorder that left large patches of his skin without pigment and led to derision and stares. In a captivating talk, he shares how he discovered a way to counter misunderstanding and fear around his appearance with engagement, dialogue -- and a smile. "Positivity is something worth fighting for, and the fight is not with others -- it's internal," Thomas says. "If you want to make positive changes in your life, you have to consistently be positive."

When I was young,

I wanted to be on TV:

the lights, the cameras,

the makeup,

the glamorous life.

And from my vantage point,

just outside of a military base
in Lawton, Oklahoma,

I didn't make the distinction
between TV reporter or actor.

It was all the same to me.

It was either,

"Reporting live from Berlin"

or "I shall attend her here and woo her
with such spirit when she comes."

(Laughter)

It was all special,

it was all the spotlight,

and I just knew that it was for me.

But somewhere along my journey,

life happened.

Ah, much better.

(Applause)

I have a disease called vitiligo.

It started early in my career.

It's an autoimmune disorder.

It's where it looks like your skin
is getting white patches,

but it's actually void of color.

It affects all ethnicities,

it affects all ages,

all genders,

it's not contagious,

it's not life-threatening,

but it is mental warfare.

It's tough.

Now, I was diagnosed with this disease

when I was working on
"Eyewitness News" in New York City.

I was in the biggest city in the country,

I was on their flagship station

and I was on their top-rated 5pm newscast.

And the doctor looked me
right in the eye and said,

"You have a disease called vitiligo.

It's a skin disorder
where you lose your pigment.

There is no cure,
but there a-la-la-la-la".

Charlie Brown's teacher.

(Laughter)

He said there is no cure.
All I heard was, "My career is over."

But I just couldn't give up.

I couldn't quit,

because we put too much into this.

And by "we" I mean Mr. Moss,

who sent me to speech and drama club
instead of to detention,

or my sister who paid
part of my college expenses,

or my mom,

who simply gave me everything.

I would not quit.

So I decided to just put on makeup
and keep it moving.

I had to wear makeup anyway.
It's TV, baby, right?

I just put on a little more makeup,
and everything's cool.

And that actually
went very well for years.

I went from being a reporter
in New York City

to being a morning show anchor in Detroit,

the Motor City.

And as the disease got worse,

I just put on more makeup.

It was easy.

Except for my hands.

See, this disease is progressive
and ever-changing.

That means it comes and goes.

At one point, for about a year and a half,

my face was completely white.

Yeah, it trips me out too.

(Laughter)

Yeah.

And then, with a little help,

some of the pigment came back,

but living through this process

was like two sides of a coin.

When I'm at work
and I'm wearing the makeup

or wearing the makeup outside,
I'm the TV guy.

"Hey, how you doing everybody? Great."

At home without the makeup,

I'd take it off
and it was like being a leper.

The stares, constantly staring at me,

the comments under their breath.

Some people refused to shake my hand.

Some people moved
to the other side of the sidewalk,

moved to the other side of the elevator.

I felt like they were moving
to the other side of life.

It was tough,

and those were some tough years.

And honestly,

sometimes I just had to shelter in place.

You know what I mean?

Kind of just stay at home
till I get my mind right.

But then I'd put my blinders back on,

I'd get back out there,

do my thing,

but in the process of doing that,

I developed this --

angry, grumpy demeanor.

Anger is an easy go-to,

and people would leave me alone,

but it just wasn't me.

It wasn't me.

I was allowing this disease to turn me
into this angry, grumpy, spotted guy.

It just wasn't me.

So I had to change.

I knew I could not change other people.

People are going to react
and do what they gonna do.

But there was a cold hard reality as well.

I was the one

that was showing anger, sadness

and isolating myself.

It was actually a choice.

I was walking out the door every day

expecting the world
to react with negativity,

so I just gave them that mean face first.

If I wanted change,
the change had to start with me.

So I came up with a plan.

Two-parter, not that deep.

Number one: I would just let people stare,

drink it in, stare all you want,

and not react.

Because the truth is
when I got this disease,

I was all up in the mirror
staring at every new spot

trying to figure out what is going on.

So I needed to let other people
have that same opportunity

to get that visual understanding.

Number two:

I would react with positivity,

and that was simply a smile,

or, at the very least,

a nonjudgmental, kind face.

Simple plan.

But it turned out to be
more difficult than I thought.

But over time,

things started to go OK.

Like this one time, I'm at the store
and this dude is like staring at me,

like burning a hole
in the side of my head.

I'm shopping, he's staring at me,

I'm going to the checkout,
he's staring at me,

I'm checking out, he's on the other line
checking out, he's staring at me,

we go to the exit,
he's still staring at me,

so I see he's staring

and finally I turn to him
and I go, "Hey buddy, what's up!"

And he goes ...

(Mumbles nervously) "Hi!"

(Laughter)

Awkward.

So to relieve the tension, I say,

"It's just a skin disorder.

It's not contagious,
it's not life-threatening,

it just makes me look a little different."

I end up talking to that guy
for like five minutes.

It was kind of cool, right?

And at the end
of our conversation, he says,

"You know, if you
didn't have 'vitilargo'" --

it's actually vitiligo,
but he was trying, so --

(Laughter)

"if you didn't have vitilargo,
you'd look just like that guy on TV."

(Laughter)

And I was like, "Haha,
yeah, I get that, I get that, yeah."

(Laughter)

So things were going OK.

I was having more good exchanges than bad,

until that day.

I had a little time before work

so I like to stop by the park
to watch the kids play.

They're funny.

So I got a little too close,
this little girl wasn't paying attention,

she's about two or three years old,

she's running, she runs directly
into my leg and falls down, pretty hard.

I thought she hurt herself,

so I reach out to try
and help the little girl

and she looks at my vitiligo

and she screams!

Now kids are pure honesty.

She's like two or three.

This little girl,
she wasn't trying to be mean.

She didn't have any malice in her heart.

This little girl was afraid.

She was just afraid.

I didn't know what to do.

I just took a step back
and put my hands by my side.

I stayed in the house for two weeks
and three days on that one.

It took me a second
to get my mind around the fact

that I scare small children.

And that was something
that I could not smile away.

But I jumped back on my plan

and just put on my blinders,

started going back out.

Two months later, I'm in a grocery store
reaching on the bottom shelf,

and I hear a little voice go,
"You've got a boo-boo?"

It's like a two-year-old, three-year-old,
same age, little girl,

but she's not crying,

so I kneel down in front of her

and I don't speak two-year-old
so I look up at the mom,

and I say, "What did she say?"

And she says, "She thinks
you have a boo-boo."

So I go, "No, I don't have
a boo-boo, no, not at all."

And the little girl says,

"Duh-duh-hoy?"

And so I look to mom for the translation,

and she says,

"She thinks you're hurt."

And I say, "No, sweetie,
I'm not hurt at all, I'm fine."

And the little girl
reaches out with that little hand

and touches my face.

She's trying to rub
the chocolate into the vanilla

or whatever she was doing.

It was amazing!

It was awesome.

Because she thought she knew what it was,

she was giving me everything I wanted:

kindness, compassion.

And with the touch of that little hand,

she healed a grown man's pain.

Yee-ha.

Healed.

I smiled for a long time on that one.

Positivity is something
worth fighting for,

and the fight is not with others --

it's internal.

If you want to make
positive changes in your life,

you have to consistently be positive.

My blood type is actually B positive.

(Laughter)

I know, corny TV guy dad joke,

my daughter hates it, but I don't care!

Be positive!

(Laughs)

A 14-year-old boy years ago --

this kid had vitiligo --

he asked me to show my face on television.

I wasn't going to do it,

we've been over this,
I thought I was going to lose my job,

but the kid convinced me by saying,

"If you show people what you look like
and explain this to them,

maybe they will treat me differently."

Boom! Blinders off.

I did a TV report,

got an overwhelming response.

So I didn't know what to do.

I took the attention
and focused it back on the kid

and other people that have vitiligo.

I started a support group.

Pretty soon, we noticed "VITFriends"

and "V-Strong" support groups
all over the country.

In 2016, we all came together
and celebrated World Vitiligo Day.

This past June 25,

we had over 300 people,

all in celebration of our annual event.

It was amazing.

(Applause)

Thanks.

Now, I'm not going to lie to you

and say it was quick or easy

for me to find a positive place
living with this disease,

but I found it.

But I also got much more.

I became a better man,

the man I always wanted to be,

the kind of guy who can stand up
in front of a room full of strangers

and tell some of
the toughest stories in his life

and end it all with a smile,

and find happiness in the fact
that you all just smiled back.

Thank you.

(Applause)