How I Learned To Live With A Chronic Skin Condition


After years of expensive medical treatments and strict diets,
I’ve come to accept that there is no cure for the rash I’ve
tried to hide my entire life.

Posted on May 02, 2017, 19:15 GMT

Rachell Sumpter for BuzzFeed News

I’ve had a rash all my life; it was there
before I could talk. When I was an infant, hives bloomed in
angry patches, an allergy to cow’s milk. In childhood, eczema
hid behind kneecaps and in the crooks of elbows. Occasional
red triangles on the sides of my mouth, a set of unwanted
parentheses. Summer heat and winter dryness aggravated it, so
did chlorine. In my twenties, the rash raced up my arms and
legs and bloomed there. I obscured the scabs beneath pants
and long sleeves.

The medical term for eczema is atopic dermatitis; the word’s
Greek root, atopos, means out of place, unusual.
Atopic individuals are hyperallergic, hypersensitive; atopia,
my out-of-placeness, is my unwanted legacy. I want to deny
ever having lived in atopia, but like the accidental mullet I
got in seventh grade, it feels like a blunder that can’t be
forgotten. My rash was the part of me that was too obvious,
which made it the part I most wanted to hide.

The rash had remained confined to my arms and legs until I
woke up one morning in January 2006, when I was 30 years old,
and looked in the bathroom mirror to see my face covered in a
bright red rash. While I slept, blotches had spread across my
forehead and cheeks, bumpy patches of red, uneven skin.

I’d want to duck and hide, convinced I shouldn’t be seen in
public, as if the rash reflected some secret ugliness in
myself.

At work, my cubicle-mate asked, “Did you get a sunburn?” I
let him believe I had. By the time I got home that night, my
face had become so inflamed it stopped absorbing moisture. I
used the same creams I’d used for years — nonallergenic,
fragrance free — but they no longer worked. With cuts around
my mouth, eating and brushing my teeth were painful. My
eyelids swelled. It hurt to blink.

I didn’t have health insurance, so I charged the $200
dermatologist visit on my credit card. She prescribed fat
tubes of steroid creams she swore were safe to use on my
face. “It’ll burn at first,” she said, “but it gets worse
before it gets better.” I slathered myself. The rash got
worse. I waited, impatient, for it to get better.

I finished the steroid creams and refilled the prescriptions.
My face and neck peeled viciously, itchy and stinging.
Children pointed on subways. Strangers stopped and asked,
“What happened to your skin? So red!” and said, “What a shame
that it has to be all over your face.” Out at dinner,
believing I looked fine, I’d feel heat dance across my face
and someone would say, “Oh my god, are you okay?” I’d want to
duck and hide, convinced I shouldn’t be seen in public, as if
the rash reflected some secret ugliness in myself.

By the summer of 2006, the rash had crept across my back and
scalp, settled in my ears and belly button and on my stomach
and feet. When I met new people, I wanted to tell them I
didn’t really look like this, that this wasn’t the real me.
The real me was rashless, with smooth, painless skin.

When I met new people, I wanted to tell them I didn’t really
look like this, that this wasn’t the real me.

Everyone had advice to offer. Things I should consume or not
consume. A story of a sister or a cousin who’d cured a rash
through a macrobiotic diet, steroid injections, frequent
meditation, wearing a lot of makeup. My friends said the rash
wasn’t nearly as bad as I thought, but I didn’t believe them.
The itch was so intense I clawed at my skin, scratching
furiously at myself, as if I could scratch the rash, and my
face, straight off. In the throes of rash, I repeated in
front of mirrors and under bright lights: You’re so ugly.
You’re a monster. I thought, If a woman no longer looks
like herself, does it mean she’s no longer herself?

It would be over soon, I kept telling myself. It couldn’t
last forever. But weeks passed, then months, and then it was
nearly a year, and the rash did not improve.

Self-hate starts early and before you know it, it’s as
easy as breathing. For most of my early life I’d been
convinced there was something fundamentally wrong with my
face. Even without a visible rash, I was too visible, one of
the only kids who wasn’t white in my New Jersey hometown.
There were incessant kung-fu yelps and ching-chongy tones in
which people would say my name, being pestered to speak “in
my language” and asked if I even spoke or understood English,
teachers calling me by the names of other Asian girls. I was
Jane Chung, Kyung Choi, Mariko Tawara. One teacher wrote me a
college recommendation for Kristin Cho. The men in our town,
veterans of wars in Korea and Vietnam, badgered my mother,
asking her where she was from and what she did. When she told
them she sewed for a living, they replied that our
people
were natural seamstresses and sweatshop
workers.

I always felt out of place, the only child of Chinese
immigrants from the Philippines. My father wanted a son,
tough and macho, a heavy-drinking jock like himself, and my
mother wanted a daughter who was more like her: extroverted,
charming, popular. I wore black lipstick and jabbed safety
pins in my ears, dripped glue in my hair and drew on my arms
with a Sharpie. I found solace in binge-reading library books
about other cities and times, writing stories about fictional
characters and made-up siblings. In elementary school, my
favorite book was about the bubonic plague.

Did I look good enough to speak, to be seen?

Lessons learned as a little girl: Looks are the most
important. You are always being evaluated. If you don’t look
perfect in a picture, rip it up immediately. Never let them
see you look bad.

In high school I carried a hand mirror, constantly checking
my lipstick, my eyeliner, my hair. Did I look good enough to
speak, to be seen? I was tested for food allergies and told
to avoid oranges, chocolate, shellfish, and peanuts, but I
dug into my parents’ candy stash when they weren’t home. At
the same time, I measured my food out on a miniature scale at
the dinner table, ounce by ounce, convinced that if I only
could weigh 100 pounds, then surely my life would be perfect,
surely my real life would start. I ate bagfuls of Hershey’s
Kisses, scooped peanut butter out of the jar, then locked
myself in the bathroom and punched my stomach and cried.

I left home for college, moved to New York City and San
Francisco and back to New York. My life was filled with
people who looked like me, yet I was still afraid of being
seen as anything less than put-together. How desperately I
wanted to be loved, and how deeply I clung to the myth that I
was inherently unlovable. In my twenties I was the person
you’d run into at parties, whose shoes you might admire, who
was always up for doing shots. Cool and invulnerable. I was
puzzled when a guy I was dating ended it by saying,
“Emotionally, we don’t connect.” I had thought it was enough
to look good, to have the right taste in clothes and music
and books. Looks were more important than the real you —
were the real you.

On my 30th birthday, my mother gave me a jar of anti-wrinkle
cream. She fretted that I’d never get married now that the
rash was on my face.

As the rash spread across my face and body, I holed up in my
studio apartment two desolate blocks from the South Brooklyn
waterfront. Having a rash made it easy to isolate. I turned
down better-paying, more interesting office jobs so I could
freelance as an editor, working from home with the blinds
down, which in turn afforded me time to write. But I’d stare
at a Word document and a voice inside my head would go, Who
the hell do you think you are? When my skin gets
better
, I thought, then I’ll do better. Yet as
long as the rash remained, I had an easy excuse for why I
wasn’t writing more or getting a better job. It was easier to
believe I couldn’t do these things because I had a rash than
to risk trying and failing.

When my skin gets better, I thought, then I’ll do
better
.

Over the next five years, the rash raged and waned and raged.
Every day was an uncertainty. Would it be a good day, or a
very bad day? Would I be the old me, the one who could wear
sundresses and tie her hair back and go to the beach without
a scarf, or the new, current me?

“You have the worst case of atopic dermatitis I’ve ever
seen,” one dermatologist said. “It’s too bad there’s no
cure.”

The rash stumped doctors. As the years passed, steroid creams
thinned and wrinkled my skin. Even smelling something spicy
could make my cheeks flare. I’d sunburn on a cloudy day.

Skin peeled off of me in tiny rolls and sheets. The floor of
my apartment was dotted with flakes that coated the bottoms
of other people’s feet. If you sat on my couch, you’d get up
with my skin on your pants. If I hugged you, I left crumbs
behind.

I stood in front of ultraviolet light boxes with goggles on,
naked. I went to acupuncture twice a week and boiled bitter
herbs. For 10 days, I ingested nothing but vegetable juice. I
wrapped myself in wet bedsheets and sat, shivering, in my
bathtub, trying to quell the incessant itch. I slept with
gloves on to stop myself from scratching, tearing them off in
the middle of the night.

I paid hundreds of dollars to a naturopath to ask me about my
childhood (was it happy?) and test my food allergies by
swinging a pendulum in front of Ziploc bags of baby carrots
and powdered cumin. I was instructed to sleep with my body
covered in magnetic discs, tap my pulse points in a specific
order, and stand facing a silver cone at 12-minute intervals.
With each doctor, healer, or expensive lotion, I thought,
Yes, this will finally be the cure. But month after
month, the rash worsened.

I went to an eczema support group. We sat, six of us, in one
woman’s apartment, sharing stories of itching and
desperation. What foods had we cut? What steroids were we
using, what special soaps? We laughed as we swapped anecdotes
about the horrors of fluorescent office lighting. For once, I
wasn’t the rashiest person in the room. One man rolled up his
pants and sleeves in front of us, wanting to be visible,
announced. His rash ran down his legs in angry ropes. “It’s
not that bad,” we lied.

I went to research hospitals and was tested multiple times
for allergies. One week I slept on my stomach because there
were 95 chemical extracts taped to my back, each one burning
to be scratched. None of them tested positive. I dosed myself
with antihistamines that made me feel like I was perpetually
underwater. I only took cold showers, because heat turned me
blotchy.

I developed an aversion to brightly lit places. On the way to
a party I’d look in my hand mirror, shudder at my skin, and
turn around and go home. The best way to hide a rash is to
hide yourself.

I stopped consuming caffeine, alcohol, soy, wheat, sugar,
tomatoes, oranges, legumes, red meat, fish, seafood, cold
foods, hot foods, processed foods, fried foods, spicy foods,
salty foods, nuts, dairy. (“Your rash has nothing to do with
food,” another dermatologist insisted.) Still, the rash
persisted.

My immune system became so out of whack that my lymph nodes
swelled, and cysts appeared like embedded BB pellets on my
neck, chest, and back. I got liver sonograms, mammograms,
blood tests. I ingested sulfur, apple cider vinegar, coconut
oil, fish oil, vitamin B, vitamin C, kombucha, green tea, and
far too much kale juice.

The rash kept flaring. I’d close my eyes before looking in
the mirror each morning, whispering a wish to be normal
today, just look normal today. Then I’d open my eyes and see
the verdict: beet-red face. Tomato Ko.

The best way to hide a rash is to hide yourself.

In the winter of 2008, I started taking cyclosporine, an
immunosuppressant drug meant for transplant patients so they
wouldn’t reject their new organs. It was also prescribed to
clear up eczema. I could only be on it for half a year,
because after that, permanent organ damage would set in. My
dermatologist had warned me that when I got off the
medication, the rash would return, probably worse than
before, but after trying to get rid of it for so long, the
promise of six months of clear skin was too sweet to turn
down.

On cyclosporine, the rash peeled away, revealing shiny new
skin. It was like emerging from a nightmare as a slightly
aged version of myself, an older sibling I’d never met. I
took hot showers, ate spicy soups and pizza, drank whiskey
and beer, told myself to enjoy it while it lasted. The
looming deadline of the rash’s return hung over every
carefree day like a time bomb, each time I went outside
without makeup on and looked people in the eye when I spoke.

Six months later, when I stopped taking the drug, the rash
came back as predicted. Worse than before. By 2010, I was
desperate. I would do anything to make it go away.

In February 2010, a dermatologist recommended I take
methotrexate, a chemotherapy drug also used to induce
abortions. It was known to clear up eczema. My immune system
was overreacting and this was supposed to calm it.

During the five weeks I was on methotrexate, I got my period
three times. Each morning I woke up sweating, feverish. But
my skin was clear, and my doctor insisted that I stay on the
medication — I looked so great!

The fifth week, an abscess developed on my right asscheek,
the size of a child’s hand. My doctor said it was an
infection from my weakened immune system. On March 22, 2010,
I took the subway uptown to Mount Sinai Hospital for
emergency surgery, standing up on the hour-long ride from
Brooklyn because the abscess was so large I couldn’t sit
down.

I believed nobody could love me when my face was red or my
arms were flaky and peeling, but in all the years I’d had the
rash, not a single person had stopped talking to me because
of the way I looked.

“Wow,” the surgeon said. “That thing has a life of its own.”
He cut the abscess out with a scalpel and stuck a catheter in
to drain the pus, then gave me a prescription for
extra-strength Tylenol.

I needed a ride home and wasn’t allowed to leave the hospital
by myself, so I called the only people I knew who lived
nearby and had a car: my parents. As I stood shivering in the
hospital lobby, waiting for them to drive through the city
during rush hour, I felt a sad, unexpected relief. The doctor
said I should get off methotrexate immediately, and short of
paying tens of thousands of dollars out of pocket for
anti-inflammatory injections made from rat proteins — another
medication that had also been suggested to me by multiple
dermatologists and was later proven to cause cancer — I’d
tried all the drugs that could erase the rash.

I stayed at my parents’ for four days, most of which I spent
lying face down on the couch. I was 34 years old, and each
night, my mother had to help me drain pus out of the
catheter. “Thank god you got off that drug,” she said.
“Better ugly than dead.”

I cringed at her words, but knew the limitations of her
English, and I agreed. When you had pus coming out of a wound
in your buttcheek, looking pretty no longer felt like such an
urgent concern.

Friends texted and called, wondering where I was, and when I
told them what happened, they were angry and worried. They
wanted me to be okay. I believed nobody could love me when my
face was red or my arms were flaky and peeling, but in all
the years I’d had the rash, not a single person had stopped
talking to me because of the way I looked. And when the rash
was at its worst, I had ridden subways, stood in grocery
store lines, even taught classes. I’d been living in public
almost every day.

Within a month, the rash returned, and this time I decided I
would no longer fight it. There was nothing left to do, no
miracle pill or cream or diet. There was only my poor immune
system, my peeling face. And I was exhausted.

These days, I’m careful. I quit a 20-year daily coffee habit;
I no longer drink alcohol. Too much wheat, nuts, shellfish,
red meat, dairy, or sugar, and the red, familiar blotches
will begin to materialize on my jaw and forehead, a spot on
my right pinkie finger, another on my left shoulder blade,
itchy and pink. Let it go for too long and the spots will
expand and gather, until my entire body becomes inflamed.

Perhaps the cure was to accept that there is no cure.

I wish I could say I found the magic cure and the rash never
came back, but I can’t. It remains there in varying degrees.
It asserts itself when I’m stressed, when I eat poorly, when
I don’t get enough sleep or try a new moisturizer or go into
a hot tub or a swimming pool. But it’s never returned for as
long or as severely as it had before.

I try to be gentle with myself. I don’t use steroid creams or
isolate myself until the rash goes away, only to dread its
inevitable return. I have to go to work, after all. I have to
see people. I have terrible skin days, and terrible writing
days, days when I doubt myself so hard I’m convinced
everything I do is shit, but I know the good days always
return.

Perhaps the cure was to accept that there is no cure. You can
only suppress a rash so much, for so long; you can’t control
its uncertainty. All you can do is try to accept its
impermanence. When it’s gone, it always comes back; when it
flares, it always dies down. Atopia isn’t exile — it’s just a
place that I’ve reluctantly learned to call home. ●

Lisa Ko’s fiction has
appeared in
Best American Short Stories 2016,
Apogee Journal, Narrative, Copper Nickel, Storychord,
One Teen Story, Brooklyn Review, and elsewhere. A
cofounder of
Hyphen and a fiction editor at
Drunken Boat, Lisa has been awarded fellowships and
residencies from the New York Foundation for the Arts, the
Lower Manhattan Cultural Council, the MacDowell Colony, the
Helene Wurlitzer Foundation, Writers OMI at Ledig House, the
Jerome Foundation, Blue Mountain Center, the Van Lier
Foundation, Hawthornden Castle, the I-Park Foundation, the
Anderson Center, the Constance Saltonstall Foundation, and
the Kimmel Harding Nelson Center. Born in Queens and raised
in Jersey, she lives in Brooklyn.

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