Part 8 of Our Award-Winning Series “Our Children’s Health”
They are meeting as members of a local OCD (obsessive-compulsive disorder) support group, and although the media—the hit television series Monk is a perfect example—portrays those afflicted with OCD in comical ways, this is a debilitating disorder.
These OCD sufferers meet at the Long Island OCD Support Network’s free support group every other week at the Mental Health Association in Suffolk County office in Lindenhurst. The gatherings are run by Warren Barlowe, a former special education teacher and behavioral coach who has OCD. As serious-looking as a science or math teacher, he enters the meeting with two briefcases. For at least five minutes, he searches futilely through them, looking through hundreds of papers for a printout of an article on seasonal affective disorder for a new member. It is ironic to note that this OCD expert’s rituals revolve around organization, a subtype of OCD.
“I was born with OCD,” says Barlowe. “I inherited it. I see it in my parents.”His father was an inventor and “collector,” and his mother was a “neat freak” who always asked and re-asked questions for reassurance, a typical OCD activity. Barlowe is saddled with several incapacitating manifestations of the disorder, including constant checking and rechecking. In the past, he lost many jobs due to his OCD, but now that he has the condition under control, he has found the perfect job—as a counselor to those suffering with the illness.
Thanks in part to Long Island-based doctors Fugen Neziroglu, Ph.D., and her husband Jose Yaryura-Tobias, M.D., and their work with cognitive behavioral therapy and serotonin research in the 1970s, OCD became generally recognized around 1990. At that time, the very effective drug Anafranil was finally approved by the FDA for treating OCD, and the Obsessive-Compulsive Foundation was formed out of a Yale research project, generating a lot of media.
It is estimated that between 1 and 3 percent of Americans—at least 2.2 million, according to the 2005 Archives of General Psychiatry, to 7 million, according to the Conn.-based OCD Foundation—suffer from the disorder. And some experts say that number is much higher, because it often goes misdiagnosed, undiagnosed or kept secret by the sufferer. Although there are researchers who estimate that approximately 1 in 200 women may suffer from OCD while pregnant or after giving birth, most researchers say that the illness affects both men and women equally.
OCD is one of seven categories of anxiety disorders listed in the Diagnostic and Statistical Manual of Mental Disorders—Fourth Edition (DSM-lV), the “bible” used by most mental health professionals. The others are panic disorder, generalized anxiety disorder, phobias (such as social anxiety disorder), anxiety disorders from physical causes, stress disorders (such as post-traumatic stress) and anxiety disorder not otherwise specified. All of these can be comorbid, or exist simultaneously and independently, with attention-deficit disorder, autism spectrum, depression, sensory integration disorder or schizophrenia. OCD is an organic, medical brain disorder, driven by fear (and anxiety), which is subdivided into two subcategories—obsessions (recurrent, unwanted, disturbing thoughts) and compulsions (repetitive actions or rituals). These rituals include hand washing, counting, checking and rechecking, praying, arranging, needing symmetry, and odd physical activities (like always walking right foot first). But practicing these repetitions results in only temporary relief of the obsession. If the rituals are not completed or are done “wrong,” the anxiety level will increase.
Both symptoms—severe obsessions and mental compulsions—are required for the classic diagnosis of OCD to be made, says Ian Osborn, M.D., a psychiatrist and author of Tormenting Thoughts and Secret Rituals: The Hidden Epidemic of Obsessive-Compulsive Disorder. Other experts, however, believe OCD is a spectrum of disorders that may include only one of the symptoms.
When Is It A Problem?
OCD is caused by a person’s brain getting stuck on a thought. The disorder is transferred into severe worry, doubt or superstition. Next, rituals are performed to alleviate the anxiety brought on by these symptoms. But since everyone seems to have some quirk, when do rituals or superstitions become harmful?
“When they start interfering with your daily routine,” says Richard Schloss, M.D., a Huntington-based psychiatrist who specializes in OCD.
There’s a difference between a healthy routine and OCD. For example, a person might feel compelled to say, “God bless you,” every time someone sneezes, out of habit or social politeness. But if they feel panic because they think the sneezer will die if they don’t say, “God bless you,” then they may have OCD.
While many people without OCD have rituals, the difference is that those suffering from OCD have unwanted, intrusive thoughts and rituals that interfere with their daily life. Other warning signs include the ritual taking more than an hour, being compelled to perform rituals, and not finding relief by performing them. Most adults suffering from the disorder realize that what they are doing is senseless, but many children and some adults do not know why they are performing the rituals.
KidsHealth.org, the website of the nationwide children’s health foundation Nemours, estimates that 2 percent of kids suffer from OCD. But Schloss and other experts feel it could be as high as 5 percent, and perhaps even higher, because as with adults with OCD, children with symptoms often keep the condition secret from their family and friends.
Schloss says that children often manifest OCD through touching and tapping a prescribed amount of times, or thinking a certain word or number is bad. OCD kids are often involved in “magical thinking” by saying, “If I do or think action ‘A,’ then the result will be ‘B’ and it will prevent something bad.
”According to Patricia Perkins, co-founder and executive director of the Obsessive-Compulsive Foundation in New Haven, Conn., OCD kids usually do well in school academically, so there aren’t as many red flags as with adults.
“But they are rule players,” she says, “so sometimes they might get caught up on some action by being a perfectionist and not getting anything done because they do too much preparatory work, or they are so busy making things look good that they erase so much they smudge the paper.”
Author Osborn, a psychiatrist at Penn State University, cites an important study by the National Institute of Mental Health (NIMH), conducted in the early 1980s, which randomly chose 20,000 subjects in a door-to-door survey. The survey found that 2 to 3 percent of the respondents had OCD. But, says Osborn (who suffers from OCD), the survey only counted those who were under a doctor’s care or on medications, and not the large group of subclinical sufferers who could bring that number up to “as high as 8 percent of the population.”
Fred Penzel, Ph.D., a behavioral psychologist who specializes in OCD and practices, with Schloss, at Western Suffolk Psychological Services in Huntington, says the disorder is found in one out of 40 people.
“It’s more common than asthma,” Penzel says.
Unfortunately, although people are born with OCD, it may take eight years from the time they realize they have the disorder to get the help they need, says Barlowe. Schloss says that one-third of adults with OCD had it as children, but Perkins, of the Obsessive-Compulsive Foundation, estimates that as many as one-half of adults with OCD developed symptoms as children. Research from many sources, including the NIMH Genetics Workgroup, indicates that the disorder is hereditary. Most people with OCD have relatives with the disorder. Osborn believes that there is “a strong genetic component” that may be as high as 50 percent.
“The same as high blood pressure,” Osborn says.
OCD can affect people differently. It can even ease up and go away, in a sort of remission. It often gets worse, though, when it is unchecked, and renders a person unable to work or function in everyday life.
As discussed in numerous studies and reported in publications such as the British Journal of Psychiatry Supplement and the American Journal of Psychiatry, untreated and misdiagnosed or undiagnosed OCD sufferers may self-medicate, turning to drugs or alcohol.
“You never get cured,” warns psychologist Penzel. “It’s a chronic condition.” The most common symptoms he sees in practice are morbid thinking (fear of deliberate self-harm or harming others), religious scrupulosity (fear of doing moral wrong), fear of being homosexual or being viewed as homosexual, germ and dirt contamination, and checking and rechecking (see sidebar for a list of subtypes of OCD).
Osborn says that it’s easy to see the difference between normal and OCD behavior. He offers the example of a person getting up out of bed at night to check that the front door is locked.
“[Someone without OCD] will find it locked, and the thought of an unlocked door is automatically gone,” he explains. But the OCD sufferer, he explains, will get up, “check the door, see that it’s fine, return to bed, and the fear remains.”
“OCD is all about persistent doubt,” says Penzel. His colleague Schloss refers to it as “The Doubting Disease.” And the ritual works to put right the obsession, although it doesn’t always succeed.
“The fearful thought sticks too much with people who have OCD,” explains Osborn. “The automatic mechanism that dismisses bad thoughts does not work.”
And what separates the behavior of a person afflicted with OCD from someone with a psychosis or another serious disorder?
“The person, as a rule, knows [their OCD behavior] is not rational,” explains Osborn. “They know it’s stupid.”
Penzel agrees: “People know it’s a little crazy. But people who have it need a sense of humor about it.”
There’s apparently a lot to have a sense of humor about.
Perkins says that OCD, like autism, involves a spectrum of disorders: hypochondria, body dysmorphia (preoccupation with how a body part looks), trichotillomania (hair pulling), hoarding, scrupulosity (over-conscientiousness, religious obsessions) and more.
Neziroglu, the clinical director of the Bio-Behavioral Institute in Great Neck, explains, “The OCD spectrum involves obsessions and/or compulsions, and there’s a high probability that if you have one condition, you may have at some point in time one of the other disorders.”
In their 1983 book Obsessive-Compulsive Disorder: Pathogenesis, Diagnosis and Treatment, Neziroglu and Yaryura-Tobias even went so far as to add eating disorders, Huntington’s chorea and Tourette syndrome as part of the OCD spectrum, the latter being a very controversial stance. They found a chromosomal link between OCD and Tourette and strongly believed that the urge to “tic”—the rapid repeated movements or sounds that those with the syndrome make—was a compulsion. Neziroglu is of the school of thought that because OCD is a spectrum, a disorder can be either a compulsion or obsession, not necessarily both.
The Science Of It
The human brain is affected by serotonin, a hormone that acts as a chemical messenger between nerve cells, affecting mood, attention, emotions and sleep. In the brains of those with OCD, there may not be enough serotonin, researchers have discovered. An early medication that proved successful in treating those with OCD, and one that is still used, is the antidepressant clomipramine (Anafranil). Currently, medications called selective serotonin reuptake inhibitors (SSRIs) have been very effective in increasing serotonin levels and have become the drugs of choice. SSRIs include sertraline (Zoloft), citalopram (Celexa), fluoxetine (Prozac), fluvoxamine (Luvox) and paroxetine (Paxil).
Support group facilitator Barlowe suggests that not enough serotonin gets reabsorbed into the system of OCD sufferers. Drugs such as SSRIs correct this, he says, by blocking the “leak” in the nerve cell. These don’t change the person’s mood, Barlowe says, but instead make it easier for the individual to resist the compulsion.
He demonstrates this by moving his hand toward a switch to turn it off. But his hand keeps returning, illustrating how a person with OCD does not have the message transmitted or does not receive the message that the switch has been turned off—so the hand has the need to keep returning.
Experts agree that medication must be complemented with cognitive-behavioral therapy—specifically, Exposure and Response Prevention (ERP) therapy—in which the patient confronts the negative thought and is encouraged not to ritualize. ERP desensitizes the patient, and, according to Schloss, is “pretty fast and focused, and can make a significant difference within three months.”
Schloss believes that the connections in the brain’s frontal lobes and basal ganglia (clusters of nerve cells), where OCD is located, become overactive, so the brain doesn’t receive what the eyes are seeing. He adds that because of the brain’s serotonin deficit “thoughts get caught in a loop.” Perkins theorizes that since the basal ganglia is that primitive part of the brain that helped early civilizations in basic survival, OCD may be some sort of protection device. The current focus of OCD research, Perkins says, is on serotonin and genetics.
Schloss also believes that childhood OCD follows strep infections, a growing theory behind many pediatric auto-immune neuropsychiatric disorders associated with streptococcus infection (PANDAS).
Long Island Pioneers
In 1972, Neziroglu and her colleagues were frustrated that there was very little information about OCD in medical texts (“three pages,” she scoffs). So she and her husband, psychiatrist Yaryura-Tobias, conducted a double-blind study (an experiment in which neither the patients nor the doctors know which patient is receiving which treatment) using Anafranil. In 1977, her team published “Obsessive-Compulsive Disorder: A Serotonergic Hypothesis,” a paper demonstrating that individuals with OCD had lower serotonin levels than people in the control group.
The following year, the two formed the Obsessive-Compulsive Society, a group of OCD sufferers, based at the Roslyn Library. The participants became the first patients in the country to go on Anafranil, which became the breakthrough drug for OCD.
But then Novartis, Anafranil’s manufacturer, stopped producing it, believing there were not enough potential users (OCD was not very well-known then). So Neziroglu and her group continued getting the medication from other countries such as Canada and Mexico. The patent was eventually extended so that Novartis resumed production, and on Long Island, Neziroglu started the nation’s first intensive cognitive behavioral therapy treatment program.
In 1989, Neziroglu published another paper indicating that OCD patients could get the same serotonin changes through cognitive behavioral therapy only, and no medication. But without medication, the changes are temporary, she says.
Neziroglu says that both therapy and medication are indicated only in resistant OCD. “Cognitive therapy is more long lasting,” she explains. “With medications alone, when [they] are discontinued there is a 90 to 99 percent chance of symptoms returning. That does not occur with therapy.” She maintains that the first line of treatment is always cognitive therapy, and that medications should always be used in conjunction with therapy—never alone.
Most importantly, Neziroglu notes that one needs a biological disposition, or the genetic factor, to get OCD.
There Is A Bright Future
OCD is not an easy disorder to live with, but it can be helped.
Perkins says, “OCD is a tricky disease, because it constantly throws impediments up in front of people who are trying to get better.”
And Schloss reminds us, “You’re never cured, but you can be treated.”
There is hope.
“People who suffer with OCD can look forward to living normal lives,” says Schloss. “With therapy and medications, they go into a sort of ‘remission,’ where OCD is a dim noise.”
As Peter, an OCD sufferer who attends Barlowe’s support group, says, “If life never got any better than [that], I could live with it.”
DOES YOUR CHILD DO THIS?
According to Huntington psychologist Dr. Fred Penzel, warning signs of OCD in children include their display of any unusual fears—strange things that most people are not usually afraid of, such as moving or changing things in the child’s room. He notes that it is more difficult to spot these things in children because they are “mental events” and therefore harder to notice.
• Checking and rechecking things such as a backpack
• Asking many repetitive questions
• Asking for a lot of reassurance (“Are you sure?” “How do you know?”)
• Avoiding socializing and school and sports activities
• Exhibiting uncommon superstitions (“If I don’t turn around six times when I see a cat, something very bad will happen”)
• Being concerned that harm will come to parents, especially the mother, which might result in separation anxiety and a lot of “Do you love me?” questions.
SUBTYPES OF OCD IN ADULTS
Example: seeing a sharp object and having the fear of harming someone with it; doing something embarrassing or dangerous. Aggressive obsession includes horrific thoughts such as driving off a bridge or killing someone. Those suffering with it believe that because they thought a specific thought, they can carry out the action (“If I think about killing my boss, then I might kill him”). OCD sufferers would generally never act on these negative thoughts, but they can’t dismiss the thoughts. Patricia Perkins, executive director of the New Haven, Conn.-based Obsessive-Compulsion Foundation, suggests that John Mark Karr, who falsely confessed to killing JonBenet Ramsey, might suffer from this.
Did I turn off the lights? Did I shut off the gas? Did I run someone over? (All three are common obsessions.)
Obsession: Afraid they will contaminate others or afraid they will be contaminated or get sick from others.
Compulsion: Washing And Cleaning
HOARDING AND SAVING
MAGICAL AND SUPERSTITIOUS THOUGHTS
If I shut my eyes and count to (pick any number), then my brother won’t die.
NEED TO KNOW AND REMEMBER
When did I eat my last hamburger? When did the last red car pass?
ORDERING AND ARRANGING
Rectilinearity, or lining things up, keeping things symmetrical or in order.
Continuously going back and forth through a doorway.
All about right and wrong and perceived hurt feelings: “I took Jim’s pen and have to get it back to him.” “Did I hurt your feelings?” “I talked too fast and I will continue to call back to tell you I’m so sorry; will you forgive me?”
Thinking that one is possessed by the devil, or having blasphemous thoughts, or needing perfect prayer.
Staring at people’s genitals. Fear of being or being considered gay (a common obsession seen by experts).
Excessive concern with illness—counting breaths, constantly taking one’s pulse.
The Cultural Differences
Many OCD experts note that other cultures and religions have their particular share of customs and rituals tied to OCD.
“People who practice [the Indian religion] Jainism, for example, use cloths across their mouths and noses to avoid inadvertently inhaling insects or microbes,” says Patricia Perkins of the OCD Foundation. “They also brush clean the area upon which they are about to sit.”
Another such cultural phenomenon is “Koro,” or “penis panic.”
According to Kuro5hin.org (K5), a website about technology and culture that welcomes open submissions from readers, “a woman in Nigeria narrowly escaped a recent lynching from an enraged crowd after a market trader claimed she had stolen his penis.” Koro is a belief, in Africa, that the genitals have been stolen, or, in other countries, that the genitals are shrinking into the body.
In countries such as China that are developing high-tech industry, OCD seems to be growing. Professor Chen Rongping, a doctor at a Guangzhou hospital, says that high-level workers are exhibiting OCD symptoms. China Economic Net reports that 12 percent of the patients being treated in Guangzhou’s main hospitals for mental illness have OCD.
Dr. Ian Osborn, who is an expert in religious scrupulosity, has his own cultural theories.
First off, he, like most of his peers, believes that Sigmund Freud, regarded as the father of psychoanalysis, was all wrong in 1909, when he blamed OCD—or as Freud called it, “obsessional neurosis”—on the family.
“Family structure fuels a sense of responsibility,” Osborn explains. “We live in a culture of personal responsibility and…that…fuels OCD.”
Prior to the Renaissance, Osborn adds, “there was virtually no personal responsibility. Everything was for the group. OCD didn’t exist, as we know it.”
Osborn pins everything on the year 1215, when the Fourth Lateran Council defined the seven sacraments and brought about the first discussion of the idea that thoughts could be mortal sins. Dr. Osborn calls it “a bad day for all OCDers.”
Today, our modern society feeds on OCD rituals.
“Lysol wouldn’t be halfway as [successful a product] if [OCD sufferers] could stop,” Perkins jokes.
And then there’s the culture of sports.
Just as high-stress employment exasperates OCD, certain individuals, such as athletes, may also be more inclined to suffer from the disorder. Dr. Schloss gives the example of the kind of “magical thinking” they resort to in the belief that they can influence an event’s outcome: “If I wear this jersey,” an athlete might say, “I will win the game.” That is superstitious behavior, he says, unless it becomes overwhelming and/or incapacitating.
OCD Behavioral Therapist
Long Island OCD Support Network
935 Northern Blvd.,
Great Neck, NY 11021
Various locations with sliding payment scales
755 New York Ave. Suite 200
Huntington, NY 11743
No sliding payment scales
Fred Penzel, Ph.D.,
Richard Schloss, M.D.
Supporting Each Other
Every other week, a group of Long Islanders who have obsessive-compulsive disorder come together to offer and receive support at the Long Island OCD Support Network’s regular meetings. The man who runs the sessions, Warren Barlowe, is no stranger to the syndrome.
When Barlowe was younger, his constant checking and rechecking began to interfere with school, and later, work. The condition resulted, he says, in dismissal from “20 to 30 jobs.” He would keep returning home to check his lights, his doors, the oven, all the while “knowing nothing was wrong—but something forced me to come back.
“It was a paralyzing fear,” he recalls, “until I convinced myself it was OK. You think you’re going crazy.”
Now Barlowe, who has his OCD under control through therapy and medication, devotes his life to helping others, both as leader of the support group and as a counselor who visits patients in their homes. Those who attend meetings say he is very comforting, and it is easy to see how, through his own experience, research and behavioral therapy, especially Exposure and Response Prevention (ERP) therapy, he is making a difference in people’s lives.
“Through ERP therapy the problem goes from scary to boring to funny,” explains Barlowe.
This behavioral therapy, he strongly suggests, should be paired with antidepressant medications like Prozac and Zoloft.
He sits patiently as the members of his group start pouring their hearts out.
These Are Not Just Bad Habits
Nikki, the tall blonde, is a 33-year-old who admits that she’s a bit obsessed with support groups—she belongs to Overeaters Anonymous (she’s as thin as a rail); Co-Dependents Anonymous (CoDa), for those in an addictive relationship; the OCD support group; and Recovery, Inc., for anxiety. Her issues initially seem slight, until she goes into detail. She constantly prays, constantly eats and constantly exercises—but she has such an intricate routine for these activities that it’s hard to believe she has time for anything else. And that’s the point: She doesn’t, and that’s why her actions are unhealthy. She was also a registered nurse but quit, afraid that she might do someone unintentional harm, a very common fear among OCD sufferers. A lot of her problems fall into the religious scrupulosity subtype and revolve around prayer and “trying to please God.” And while she has faith in Barlowe’s counseling, she says, “Warren is going to help me. But God is above Warren.”
Bob is 76 and he, too, has the fear of doing harm. He gives one heartbreaking example, which actually shows that he tried to help someone, but to Bob, it was harming them. His ritual consists of constantly trying to prove his innocence—that is, to himself. He has been hospitalized seven times. But he has hope. “When you’re 76, you don’t want to look forward to a future of suffering,” he says.
Peter, 41, has what most people recognize as classic OCD. He became a hand washer at the age of 8. Fortunately, his supportive family realized that he had a problem and sought help for him. This was before OCD was officially recognized, so he was diagnosed with “phobias” and told there was little treatment. Meanwhile, his behavior became so intrusive that he quit school when he was 12. It’s not germs he fears—it’s being “unclean.” When someone of “questionable hygiene” would pass him in a public place, he would find the need to clean himself. Today, through years of medication and effective and ineffective therapies, he has overcome the cleanliness ritual and considers himself in remission.
“Therapists,” Peter laughs. “I’ve seen more than Woody Allen. I always had a great wanting to be like everyone else.”
Tracey was new to the session and remained quiet for the majority of its two-hour duration. But when she opened up, it was as if a dam had burst. She has suffered from OCD since she was a child. She has multiple rituals and comorbid conditions, including depression. The worst part, however, is that her husband is not the least bit understanding, and she worries that their fighting will affect their kids.
Fred Penzel, Ph.D., a Huntington behavioral psychologist specializing in OCD, says that unsupportive family members can stress out the OCD patient even further and make the condition worse. He says that people have to know that OCD “is not just a bad habit: People just can’t stop their behavior. They need to take medication to take care of the biological aspect of it. And they need to complement it with therapy.”
And then there’s Richard.
Richard Downing is a 21-year-old tough-looking guy from Oceanside. Close-cropped beard, glint in his eye, and tattoos. But the minute he opens his mouth, he turns out to be an articulate, deep-thinking young man who is being ripped apart by this disorder.
“I didn’t know what was going on with me,” he says of his lifelong ordeal, which has brought him to numerous frightening emergency room visits. “I was just diagnosed four months ago.”
He realized at age 11 that something was wrong (“I always had the urge to keep things neat and in order”), and by 13, he was performing rituals.
“I was obsessively closing the door. I never felt it was closed all the way. I broke a couple of door knobs, I would be closing them so much.
“I didn’t know what was going on with me. I was so embarrassed.”
A year ago, he saw a TV show that changed his life: MTV’s True Life: I Have OCD. “The things these kids were doing related to me substantially. This is what I have!
“I was worried. How do I approach anyone to get help? I was always a hypochondriac as a kid, I always cried wolf. No one believed me.
“Everything went terribly wrong. I began self-medicating. I fell into drugs. I was so afraid. I didn’t know what was going on. Before you get diagnosed you feel all alone. You feel like you’re losing your mind. You feel like you’re going crazy. You feel so abnormal and you think they’re gonna lock you up in a mental institution in a straitjacket.”
His rituals have become more intense. He has started a hand-washing routine. If he thinks the door is not closed properly, he will sweat profusely and break out into a full-scale panic attack. He now has to perform activities an even number—two, four and now eight—of times. He is obsessed with microscopic dust. “I bang out my towel, fold it, bang it out again. I’m afraid of lint. Even if I don’t see it, I’ll feel it.”
He spends an inordinate amount of time checking and rechecking the air conditioning settings and plug in his basement apartment (he lives with his grandmother, who attended the support group meeting with him).
An animal lover, he recently lost his job in a pet shop because his rituals were interfering with his work. He’s been to “10 to 12 shrinks.”
His most recent terrifying experience: “I was running ragged in my room, pacing, I couldn’t hear, my brain was running like an overheated engine. I couldn’t sleep. I knew I needed help.” But he has no health insurance.
The only thing to do was go to the emergency room, where he sat for eight hours, “freaking out.”
He says he has 48 rituals, which include washing; setting/resetting his air conditioner; cleaning dust from clothes, sheets, towels, shoes (“That’s a big one”)—he taps them out eight times; tapping out imagined water in his ears (“That’s a big one”), which stopped him from taking showers (“I had to shake my ear 28 times”); blowing “contaminated” air out of his mouth; rinsing his mouth with water; pushing plugs into outlets; washing his face eight times in a row and then washing his neck; preparing his bed by getting rid of all wrinkles in his sheets, and sometimes sleeping on a bare mattress; shaking out his blanket eight times on each of the four sides; making sure each side of his sheet is even on the bed—throughout the night.
He’d perform these rituals in a number system, two times, 12 times, 48 times (“I’d never go more than 48”). He’d get up in the middle of the night to do these things. Even at work he had to hold his breath when he swept the floors, and shake his head numerous times to free it from dust. These rituals took hours out of his life each day.
“I keep saying to myself, ‘I know this is ridiculous. I need to stop. But I can’t.’”
But Downing has found help, after several very frightening and nonproductive visits to emergency rooms and clinics. Now that he has the OCD diagnosis, he doesn’t feel so all alone. In fact, he feels compelled to go public and get the word out to others who are suffering in silence.
He is on medication ($220 worth out-of-pocket every month) and attends therapy. He finds Barlowe’s support group very helpful and practices the exposure response therapy at home.
“I had no hope,” Downing says. “I needed to be on suicide watch. Now I have so much hope.”