When Noozhawk columnist Jon Lukas was 8 years old, he developed a serious kidney problem that required major surgery. Although he made a full physical recovery, the trauma of going through such an ordeal at such a young age left Lukas with an equally debilitating problem. He began to think about getting sick again constantly; he found himself worrying on a daily basis about things like cancer, brain tumors, even HIV. That was when Lukas first began to suffer from Obsessive-compulsive disorder, or OCD.
“OCD is an anxiety disorder,” Lukas explained. “People get stuck in obsessional thinking, and the obsessional thoughts are often very irrational, but they cause a significant amount of distress, and that distress leads to difficulty functioning.
“What ends up happening is that the anxiety we feel from the obsessions lead to compulsive behaviors.”
According to Lukas, many of these compulsive behaviors can be extremely time consuming, and can cause people with OCD to isolate themselves for fear that others will view their behaviors as strange, paranoid or even psychotic. The social isolation is exacerbated by the shame and guilt that people with OCD often feel concerning their sometimes disturbing thoughts. Lukas knows first-hand about just how irrational and absurd some of these thoughts can be.
“When I was 12 years old, I first heard about HIV,” Lukas said. “I didn’t know how you got it, but I was completely consumed with thinking, ‘What if I have this disease?’ Not ‘What if I get it?’ but ‘What if I have it?’”
Lukas went through years of therapy from childhood into adulthood, but nothing seemed to help. His irrational fear of getting, or being, sick persisted, and worsened. As Lukas got older, his obsession turned toward a fear of hepatitis. He began doing extensive and time-consuming research on the disease, and frequently visiting doctors to ask them questions about it, despite the fact that he showed no symptoms. It was during this time that he developed some rather odd compulsions.
“With all these fears, I started doing a lot of these strange rituals, and a lot of them were mental,” said Lukas. “Like counting in my head over and over, or if I heard a weird word on the television that had to do with cancer or death, I would have to turn the TV off and on until the word sounded right to me.”
Jeffrey Schwartz, associate research professor of psychiatry at UCLA School of Medicine, referred to this tick-like behavior as “brain lock.” It is when a person suffering from OCD is completely unable to stop repeating a certain behavior due to the belief that the behavior is preventing a feared consequence from happening.
When Lukas was 20, searching desperately for answers to his malady, he went to UCLA for its Intensive OCD clinic, now known as the Semel Institute. While he was there, he endured a major tragedy: his doctor, whom he had become quite close with, died in a plane crash. But rather than allow the loss to curtail his efforts to overcome his disorder, Lukas says it sparked something inside of him.
“My doctor said to me before he died, ‘You really have to start either challenging these obsessions and compulsions and getting to work on this, or you’re going to be living with this for the rest of your life, and it is going to get worse.’ So when he died, I made it a mission to really get to work on it,” Lukas said.
His journey eventually took him to a month-long intensive in-patient treatment center in Kansas, which is where he says he really buckled down and took control. While there, he went through what is known as Exposure and Response Prevention, or ERP, which is a form of cognitive behavioral therapy that forces the person to feel the anxiety of his obsession, think about it, talk about and externalize it, but not follow through with the compulsion. According to Lukas, when people are unable to do their compulsion, their anxiety level shoots way up, but the longer they sit with it, without performing it, the more that anxiety dissipates.
Lukas returned home from the treatment center with a new focus, and decided to go back to school to earn his master’s degree in counseling psychology, with a very specific goal in mind.
“I felt like I had a real drive and purpose at that point, and I knew exactly what I was going to do with my life — work with OCD,” Lukas said.
For the past two years, the 36-year-old Lukas has been in private practice here in Santa Barbara, treating others who are facing the same terrible struggle that he faced since early childhood. His biggest challenge, he says, is getting his patients to really sit with their anxiety without doing their compulsion, no matter how urgent the feeling may be.
“If someone is afraid of doorknobs because they’re afraid of getting germs, for instance, I might just have them touch doorknobs, and hold them for as long as they can, and talk about it as they’re doing it,” Lukas said. “It’s very uncomfortable for them, but the key is not to go run to the bathroom to wash their hands afterward ... not to give in to the compulsion. That’s what Exposure and Response Prevention is about.”
Now a husband and a father, Lukas admits he has new stresses in his life, and that sometimes those stresses begin to lead to some of his old thought patterns, but he always practices what he preaches to his patients, and avoids giving in to his old compulsions at all cost. Much like an alcoholic may have to go to AA for a lifetime to stay sober, a person with OCD may need to consistently practice ERP in order to avoid compulsive behaviors.
An estimated 2 million to 3 million adults suffer from OCD, and that number may actually be much higher, since many afflicted people don’t come forward out of shame and fear of how they will be perceived. What Lukas hopes to get across to people with OCD is that while it is a chronic disorder, it is treatable, and nobody with this disorder should give up hope that there is a better life out there for them.
While Lukas may have overcome his OCD, he now has a new obsession: helping others to do the same. Thankfully for his patients, that is one obsession that Lukas is happy to hang onto.
“I always ask my patients, ‘What about long-term, what do you want? Do you want to live like a hostage’?” Lukas said. “I try to get them to look down the line and see what life would be like if they didn’t have to live like that. I know how much better life can be, and everyone deserves that.”
Click here for Lukas’ latest column.
— Kevin McFadden is a Noozhawk contributor. He can be reached at .(JavaScript must be enabled to view this email address).
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