Here’s what it’s really like to have obsessive-compulsive disorder

Doan1Courtesy of William Doan

“Why are there always so many damn socks in the laundry?”

William Doan’s wife asked him that question 10 years after they
got married. He laughs when he remembers it. There were, and
remain, so many damn socks in their laundry because when William
Doan wakes up in the morning he puts on two pairs.

“I had to sort of fess up at this point,” he said, “and she was
like, ‘really?'”

Doan, at 57, has lived much of his life with a diagnosis of
obsessive-compulsive disorder, or OCD, as well as an anxiety
disorder. He’s an artist and professor of theater at Penn State

In pop culture, OCD is often used as a kind of shorthand for
fastidiousness. Every source I spoke with for this story quoted
the casual diss Oh, you’re so OCD! that sometimes gets
lobbed at neat freaks (or that neat freaks self-deprecatingly aim
at themselves.)

But real-life OCD has a specific, straightforward meaning. People
who have it experience obsessions and compulsions that feed each
other in recursive, hard-to-escape loops.

Wayne Goodman, chair of the department of psychiatry at the Icahn
School of Medicine at Mt. Sinai hospital in New York City,
explained what obsessions and compulsions are.

“Obsessions are always unpleasant thoughts, or unwanted images,
or unwanted impulses. They’re not in any way pleasurable.”

A child might imagine again and again their parents killed in a
plane crash. A religious person might feel bombarded with
blasphemous urges. Someone else might fear toxins or pathogens
that could invade their body.

So they develop compulsions, rituals they act out that offer
temporary relief from the obsessions. The connection between the
obsessions and compulsions may be difficult for people who
haven’t experienced them to understand.

“There are things like hand washing, doing things over and over
again, checking and checking,” he said. “But sometimes they can
be much more covert. They can be things you do in your head, that
nobody else is aware of, to try to neutralize a disturbing
thought or unwanted impulse.”

(Interestingly, it’s not actually clear that obsessions arise
first and lead to compulsions. There’s a body of research that
suggests the reverse. Young children with OCD tend to display
compulsions before they can articulate obsessions.)

That said, OCD isn’t about delusion or psychosis, where people
can’t distinguish reality from their illness. Goodman said,
“Patients with OCD in general have very good insight. They
recognize that the thoughts they’re experiencing, although
intrusive, are from their own brain.”

Goodman’s description tracks with Doan’s experience. “It’s
completely irrational,” he said. “I don’t even reflect on it or
try to figure it out anymore. I just know when I get dressed in
the morning I’ve got to put on two pairs of socks. It’s part of
how I have to begin my day. I have been traveling where I have
gone and bought clean socks because I miscalculate the number of
socks I’m going to need.”

It would be a mistake though to imagine OCD as a set of odd, if
somewhat difficult to manage, quirks. For people who live with
it, OCD becomes part of the texture of their hours and days. When
Doan walks, indoors, outdoors, or on the treadmill, he counts his
steps: 1 … 2 … 3 … 4 … 1 …. 2 …. 3 …. 4

Other people with OCD may perform small rituals – in their heads
or with their bodies – all day. These can be relatively trivial
and difficult to notice. I watched a friend throw salt over her
shoulder three times before she cooked for more than a year. But
before she told me the ritual related to her OCD, I assumed she
was just superstitious.

But the compulsions can also be debilitating. Goodman describes
patients who end up housebound, unshowered, and with uncut
fingernails because they’re avoiding germs in the water and

For many people with OCD, the symptoms ebb and flow over the
course of their lifetime.

Doan4 OCD obsessive compulsive disorderWillian

“I can tell when im going to have some insomnia,” Doan said. “Or
suddenly I know that because I’ve been rehearsing arguments with
people over and over and over again in my head that its like
‘Whoa, you’re letting this get the best of you.'”

Doan said that he feels OCD, along with anxiety, in his body
before it translates into a mental experience.

The sensation begins in his chest, where the diaphragm sits and
the bones of the rib cage join together. He feels vibrations, and
a tightening feeling, and his breathing getting more shallow.

“If I could hear it I feel like it would be like humming. It’s
vibratory, that’s the best word I have for it,” he said.

Those vibrations the signs of either a panic attack coming on or
a period of heightened symptoms that can last for days.

When that happens, he has a series of coping mechanisms he can
engage. He meditates. He goes for long walks. He makes art – some
of it is illustrating this article – to express the wordless
sensation of the illness.

Sometimes Doan’s wife will notice his symptoms before he does.

“We’ve been married for 33 years. And while she only figured out
the socks 10 or so years in, she also just knows my personality.
And she is really sensitive to when I might be moving into a
phase of heightened anxiety.”

She’ll suggest he go somewhere quiet for a couple days to cope,
or go for a long drive, or close himself in his art studio.

“She’s become a wonderful partner in that sense, in that she also
senses what might be happening, and she knows what my good coping
mechanisms are and she helps to facilitate those.”

Similarly, he said his close collaborators in his theatrical work
have a habit of using humor to help break him out of
obessive-compulsive loops.

While Doan’s experience may be fairly typical as far as OCD goes,
the illness has no single common form. Blair Simpson, a
clinician, researcher and professor at the Columbia University
Medical Center, said that while OCD may be easy to define, in
practice it can be hard to recognize and diagnose. That’s because
the symptoms follow certain stereotyped patterns. But
any two people with OCD will likely have very different

Broadly speaking, OCD divides into five categories or “symptom

Some people live with fears of contamination (1) or harm (2).
They might worry that something will damage or contaminate their
bodies. Or they might fear hurting or infecting their loved ones.
These forms of OCD tend to associate with cleansing and checking

Other people feel compelled to do things “just so” (3). I spoke
to one person who feels paralyzed when he can’t figure out which
parking spot lies closer to his door at work. Another walks into
stores to clutch every garment on her favorite rack until the
ritual abates.

Then there are people who struggle with “kept thoughts” (4).
These are “immoral” thoughts or urges that contradict the deeply
held beliefs of people who live with them, like a religious Jew
constantly imagining eating a pig.

And a final group struggles with hoarding (5), although
researchers now consider that a somewhat separate disorder.

But even within those categories, no two patients have the exact
same experience.

“I’ve seen thousands of patients, but I don’t think I’ve seen the
same symptoms replicated more than once,” Simpson said. “You have
no idea the range of thoughts or impulses patients have. We have
patients who think California is contaminated.”

Doan3William Doan

For that reason, she said many researchers avoid focusing too
heavily on the specific ways OCD can manifest. Those vibrations
Doan feels are too particular to him to draw any broad
conclusions from – though they may represent a type of
sensation to which other people with OCD can relate.

Right now, Goodman and Simpson say there are only two proven
treatments for OCD.

Medicine can help
– specifically “serotonin reuptake
inhibitors” (SRIs and SSRIs) like Zoloft, which are also used to
treat depression and anxiety.

Psychiatrists don’t actually know exactly why SRIs work
for OCD, Goodman said. And for a long time serotonin acted as a
kind of red herring. Researchers ran down a blind alley looking
for a cause of OCD in the brain’s seratonin system. But they
found no answers there.

The other
proven treatment
for OCD? Exposure therapy,
which is a specific type of what psychiatrists call cognitive
behavior therapy or CBT.

When Simpson has a patient, she’ll work with them to list the
things they fear: their obsessions. Then she’ll work through the
list with them, from mildest to most severe. She guides them to
encounter their obsessions without letting their rituals kick in.

It’s not easy.

“Initially they get more anxious,” Goodman said of his own

People with OCD work hard to avoid their triggers. One person I
spoke with compared them to allergies. The mild ones may resemble
a light cat allergy. They might make you uncomfortable if you
enter the wrong house. Severe ones can be closer to a bad peanut
allergy. You might feel like you’re dying if you bite into the
wrong sandwich.

And for CBT to work, Simpson said, the course of treatment should
be fast – just a few weeks. That’s a lot of stress in a short
period of time.

But even with the best medicine and CBT from an expert
psychiatrist, Simpson said, she can only expect to reduce
symptoms in most patients. There’s
no true cure

“We see on average about a 40% decrease in severity,” she said.
Some patients go into near-total remission, while other may see
little to no impact at all.

Doan2William Doan

The researchers I spoke with want treatments for their patients.
They hope those methods will emerge from better knowledge of the
disease. Right now, they suspect the cause or causes of OCD lie
in the big-picture ways different parts of the brain connect with
one another. And there are already suspect circuits. But the
details remain a mystery.

When they figure out the details, Goodman hopes it will transform
her job.

“Ideally, I would have battery of noninvasive tests that look at
the brain,” she said, “And I could tailor treatments exactly to
what I saw, and then monitor the outcomes to see not only if my
patients are feeling better but if the circuit is performing

I asked her how far she thinks we are from that kind of
treatment, and she paused for several seconds.

“Further than I would hope. I hope I get there in my lifetime.
And if we don’t I hope we get there soon.”

In the meantime, most people with OCD can learn to manage their

“I think it’s a significant experience in my life, but not a
dominant one,” Doan said. “There are times where it has felt like
a dominant one, and that’s when reaching out to a counselor or
using my coping mechanisms can help. But you know, I don’t wake
up every day frustrated or anxious about these things anymore.”

I asked him if he would flip a switch to turn off his OCD if he

“Ten years ago I would have said yes,” he said. “I want to do
away with my OCD.”

“But I think the time I’ve spent trying to figure out what to do
with it, how to cope with it, how to manage it, how to embrace
it, how to laugh about it, and how to let it be part of who I am
has brought me to a point where I think a lot of my creative
energy comes from that place. I’m not saying if I didn’t have OCD
I wouldn’t be able to function as an artist, but I do think a
good symbiotic relationship has emerged between my obsessive
energy and my drive to make work.”