Years of life lost to OCD

By age 7, Anthony Barone was descending into a confusing world of obsessive thoughts and compulsive behaviors that would come to dominate his life.

As a boy, he felt driven to do things repeatedly. He would obsessively run his hands across his school desk. He would constantly move his pencils and pens in and out of his desk. He would complete his schoolwork and then erase it, over and over again.

Even the promise of sleep did not offer relief. Unable to resist the urge, Barone said, he would repeatedly crawl out of bed to stroke a crucifix hanging on a dining room wall or handle other objects in the room.

Barone was 50 when he realized that he suffered from obsessive-compulsive disorder, or OCD. It took an additional 13 years to receive effective treatment that allowed him to lead a more normal life.

Now 72, Barone says he is content with his life, savoring experiences he once avoided and cherishing old friendships while cultivating new ones.

But he also feels a profound sense of loss for the life that could have been. He dropped out of high school and never married. The product of a large Italian American family, he thinks about the children and grandchildren he never had.

“OCD affected every part of my life -- emotionally, sexually, professionally, mentally,” Barone said. “I missed so much.”

Barone has made it his mission to educate teachers, doctors and mental health professionals about the disorder.

“I don’t want young people to go through what I went through,” he said.

During Barone’s youth in the late 1930s and 1940s, OCD was rarely talked about and little understood. Now it gets regular airtime on TV shows such as “Monk” and on A&E;’s documentary-style program “Obsessed.”

Yet experts in OCD say that too few therapists have specialized training to treat it. Research conducted in conjunction with the Obsessive Compulsive Foundation found a 14- to 17-year gap between the onset of symptoms and effective treatment.

“I call that a crime,” said Daniel M. Potter, Barone’s therapist. “That’s years of needless suffering.”

Scientists believe OCD is caused by abnormalities in the structure or functioning of the brain. An estimated 4 million people in the U.S. have the disorder, said clinical psychologist Jeff Szymanski, executive director of the Obsessive Compulsive Foundation, and as many as 3 million more don’t fit the psychiatric diagnosis but have some symptoms.

Shana Doronn, a therapist featured on “Obsessed,” describes obsessions as unwanted thoughts, images, impulses, urges and fears. “Compulsions are what the person does to reduce the anxiety caused by these thoughts,” she said.

Barone said that when he turned 12, his worried mother carted him to the family doctor, who diagnosed his behavior as a normal sign of puberty -- even though Barone had failed fourth grade and was about to repeat sixth grade a second time.

Eventually, Barone recognized his symptoms while watching a TV show about OCD. He sought help. When his condition was finally diagnosed, he was treated by a psychoanalyst untrained in his disorder.

By the time he met Potter, Barone’s illness encompassed nearly every aspect of his life. He washed excessively. He avoided using the phone during certain hours, traveling down certain streets, entering certain buildings. He obsessively checked door locks and stove burners.

“Imagine 60 years of this stuff,” Potter said. “This guy had his life robbed from him. And at this point, that’s what he’s dealing with.”

According to the Yale-Brown Obsessive Compulsive Scale, a standard psychological instrument that measures OCD, Barone used to fall between the severe and extreme range, leaning toward extreme. But with the help of medication and talk therapy, he was able to stop behaviors he had exhibited for decades, Potter said. Like many people diagnosed with severe OCD, Barone takes antidepressants.

Now he falls in the low to moderate range for the disorder -- “a huge, huge change,” said Potter, executive director of the Midwest Obsessive Compulsive Disorders Center.

Barone works as an information clerk at the Illinois College of Optometry, where the students and former students have become like his extended family. Their photos are arranged on his desk along with those of his relatives. He has been invited to students’ weddings, birthday parties and graduation banquets.

Barone credits personal relationships with saving him from isolation and despair.

“I’m so thankful for the last 10 years of my life,” said Barone, who volunteers with the Obsessive Compulsive Foundation. “I have good friends. A good job for me. For me, I’ve been accepted -- even more than accepted: respected.”

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dshelton@tribune.com