Illuminating the doubting disease

Martha K., who did not want her full name used, looks poised and impeccable, like many of the well-heeled women you see walking through Saks or Nordstrom on weekday afternoons. Although dressed for a pleasant afternoon, the Atherton resident is on her way to San Jose for the annual convention of the National Obsessive Compulsive Disorders Foundation. The convention, which drew 500 people from around the country, took place Sept. 6-8 at the Fairmont.

She is going, she explained, because her husband and son "can't stand" living with her anymore. "They can't take all the rules."

Neither can she, she said, detailing how her mania for cleanliness has made life in her household progressively more unbearable. "When my son or husband would walk through the house, I would vacuum behind them," she said. Disturbed by the sight of ashes, she bought her husband "one of those airport ashtrays" and each time he ashed, she would push the lever, open the tray and wipe the excess ashes with a rag.

At one point, her fear of stray dirt grew so severe she only allowed her husband and son to walk, eat or watch TV on plastic mats lining the floor. "That was when they said they'd had enough," she said. "That was when I realized I needed help for my OCD."

That was four years ago.

When it comes to OCD, or obsessive compulsive disorders, Martha has plenty of company. According to the most recent studies, an estimated 5 million Americans suffer from OCD.

OCD is a pervasive and extreme form of thinking in which common thoughts and activities--such as washing one's hands and checking the oven--become all-consuming rituals that can interfere with, if not obliterate, normal functioning.

"The person who compulsively hoards things, that's OCD. The person who wears gloves to the supermarket from fear of contamination, that's OCD. The person who alphabetizes soup cans, that's OCD," said Dr. Lorrin Koran, who heads the OCD clinic at Stanford University.

The list goes on: The adolescent who washes his hands to bleeding. The woman who carries a plastic bag to the shopping center because she cannot urinate in a public bathroom. The child who pulls her hair out, strand by strand, to near-baldness (a condition known as trichotillomania). The person who cannot complete a list because the printing is not "neat" enough. The man who must add, subtract, divide or count before going through a doorway. The basketball player who must bounce a ball 14 times before each foul shot, then cannot shoot because the ball didn't bounce right.

Perhaps the most well-known incidence of OCD was Howard Hughes. When the reclusive aviator and Hollywood producer died in 1976, he left behind roomfuls of hair cuttings, fingernail clippings and bottled urine. The elaborate construction of his home, with its costly purification systems and obstacles to the outside world, shocked the nation.

OCD should not be confused with eccentricity, collecting or a normal desire for cleanliness. For example, someone who washes his hands before meals does not have OCD; someone who constantly washes his hands unrelated to meal times or specific activity does. Someone who collects antique bird cages does not have OCD; someone who saves everything does.

Two factors distinguish OCD from similar but normal behaviors: time and a sense of obligation. As a general rule, a person is considered to have OCD if the time spent on compulsive or ritualistic behavior occupies more than an hour a day.

Why an hour? "It just seems like a lot of time to waste," Koran said.

The second distinguishing characteristic is a sense of being compelled to do the activity. "People with OCD do not want to do the things they do," said Koran. "They must do them."

"The French call it the doubting disease," said Dr. Karla Jurvetson, a psychiatric resident at the OCD clinic. "It's a good name because there is a lot of doubt associated with the disease. People don't believe evidence in front of them. They may have just checked the lock, but then they immediately begin to wonder, 'But did I lock it?'" Koran recalls one patient, a schoolteacher, whose fear of contamination became so all-consuming she had to stop working. Another woman, also frightened of contamination, nearly lost her relationship because she required her boyfriend, like herself, to strip at the door and shower each time he came into the house, regardless of how briefly he had been out and how many times he had showered before.

But the worst case Koran has seen was a woman whose mania for hoarding, which included rotten food and garbage, was so severe that the health department repeatedly came to her home and condemned her property.

Stanford has only had an OCD clinic since 1989. Located in the new psychiatric building at 401 Quarry Road, the clinic is just a few rooms and a shared reception desk. As small as it is, it is extremely busy. The clinic, staffed by just Koran, one research assistant and four residents, sees 200 patients each year.

The Stanford OCD clinic is the only one of its kind in Northern California. While most of the patients come from surrounding communities, some come from as far away as Singapore.

"We are very active," said Jurvetson. "We have far more of a backlog than the other clinics."

She attributes the high numbers to the high incidence of the disorder. "There are far more people than previously thought," she said. "It used to be considered rare. Now we know differently."

Doctors used to estimate the number of OCD patients as one in 10,000. But a recent study, the first to actually measure the subject, showed the number to be closer to one in 100, or about one to 2 percent of the population.

Still, as busy as the clinic is, Koran believes the clinic is reaching only about 12 percent of the affected population. "People are reluctant to come in for treatment. They are afraid of the stigma. They are afraid they will be labeled crazy."

Koran is now considered one the nation's leading authorities on OCD. Until seven years ago, even he had had little exposure to the disorder. "I got interested because of a patient." he said. "She was anorexic, depressed and had OCD. I kept going to the library, doing research, hoping I would find something in the literature that would help her. But there was very little out there."

Before setting up the OCD clinic, Koran started the comprehensive medical unit at Stanford Hospital. The comprehensive unit treats medical conditions that are accompanied by a psychiatric condition, such as diabetes plus depression, anorexia nervosa and chronic pain.

OCD, Koran says, is his last psychiatric stop. "It's really interesting stuff," he said. "It offers a window on the brain and behavior. And you can actually help people get better."

"It's not particularly curable, but people do get a lot better," confirms Jurvetson. "You get people whose compulsions used to dominate their every waking moment, and then they get them down to a few hours. That's good."

Although the disorder has been well-described in psychiatric readings since the late 1800s, treatment has been limited and scattershot.

"Traditional psychotherapy doesn't really work for these people," said Jurvetson. "Insight doesn't really help. They already recognized their problem. They just can't control it."

In 1990, things changed considerably. "We discovered Prozac," said Koran. For many patients, Prozac, and drugs like it, have been the new salvation. "Patients will come to you and say they have been cured," he said. "They haven't, but they can get much better."

"Before I took Prozac I couldn't brush my teeth until I had counted to 28, then 14, then seven and so on," said one woman, a nurse, who did not want to be identified. "It could take hours."

It is not just Prozac that has made a difference, but all the new drugs classified as serotonin uptake inhibitors: Anafranil, Zoloft, Paxil, Luvox. "They all work," said Koran. "It's just a question of side effects."

Behavioral therapy works well, too, and has no side effects. To bolster the claim, Koran brings out two PET (positron emission tomography) scans for each of two OCD patients. Before treatment, several areas in the frontal part of the brain and several deep structures of the brain show up as bright red, a sign of extreme hyperactivity. In each of these patients (one treated with medication and one with behavioral therapy) the area softens remarkably in color, more like the normal brain.

In behavioral therapy, patients are gradually desensitized to their fears by working through them. "We make a list of the person's smallest fears and biggest fears," said Koran. "If the least fearful thing is touching a doorknob and most fearful thing is touching a toilet, we start with the doorknob.

"We might ask the person to touch the doorknob and not wash for two hours," he said. "It's hard, but they start to realize the anxiety goes away by itself, independent of whether they wash or not"

No one really knows why some people get OCD. Some evidence suggests a genetic link. People who have a parent with OCD are 4 to 20 percent more likely to have OCD. But genetics isn't the whole story. "Genetics can increase the risk," said Koran, "but it won't predict OCD."

Evidence also suggests a physical component. There is a very strong link with Tourette's syndrome, a disorder characterized by uncontrollable, purposeless tics and uncensored verbal outbursts. Fifty percent of people with Tourette's have OCD.

But there is no handy social or psychological profile: no link to childhood trauma, sexual abuse, deprivation or economic status. "It is across the board," said Koran.

Not just across the board, but across the world. In the largest epidemiological study ever done on the subject, conducted on 18,000 people in five countries, researchers found the distribution of OCD to be equal in every study. "The only place you don't find it as much is Taiwan," said Koran. "We have no idea why."

OCD generally shows up in childhood or adolescence. By age 25, says Koran, OCD is well-established.

The nurse who got relief from Prozac began noticing symptoms when she was in seventh grade: "I would sit down to write a letter and had to keep starting over because the letters weren't neat enough. I'd start, crumple the paper and start again. I would have paper all over the floor and never finish the letter."

Although she doesn't specifically remember when her counting behavior began, she does recall feeling "superstitious" about "bad" numbers.

Superstitions differ from obsessions and compulsions in that they are fleeting and generally linked to specific events, such as ladders, black cats or cracked mirrors. Obsessions and compulsion, on the other hand, "come unbidden," said Koran, independent of external events.

"People with OCD never want to do what they are compelled to do," he continued. "The simply have to do them." Although the behaviors vary widely--the compulsively tidy would seem to have little in common with people who hoard--the root beliefs are the same.

"The commonality is not the form, it's the content," said Koran. "The obsessions may be different, the rituals may be different, but the anxiety is the same."

Indeed, many of the behaviors are an attempt to ward off life's deepest fears: death, disease, violence to one's self or loved ones, random acts of nature, inability to protect one's children from all the potential sources of harm in the world. "A lot of the impulse is excessive concern for other people," said Jurvetson. "A lot of oven-checking comes out of concern for your children or family. It's just that everything gets exaggerated."

Or, people simply fear their own failings or impulses. "They fantasize they are going to kill their kids, that they are going to drown them, stab them or put them in the oven."

Do they do these things? "Never," said Koran. "These are their fears, not their actions. That's what their rituals are about. It prevents them from acting."

Martha K. just wishes she could clear her mind, stop cleaning, or leave a dish out on the counter overnight. "I would really like it to stop," she said. "I'm tired of watching out for every crumb."1 n



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