OCD: Treating an illness that affects as many as one in five
We all have nagging worries -- did I turn off the stove? Did I lock the door? But for Canadians with obsessive-compulsive disorders, these thoughts get stuck, playing over and over in the mind like a broken record. And the only way to lower the volume is to perform "rituals" -- behaviours such as constant checking, excessive washing or extreme hoarding to control the unwanted thoughts. Symptoms can be so severe that that some patients are unable to hold down jobs, go to school or even leave their homes.
Paul (not his real name) is a prime example. He is 14 years old and has lived with severe OCD for a decade. In his tortured world, everything must stay on his left. Paul will obsessively move, pictures, furniture, even people to his left side. He believes that if things are on his right, he will suffer extreme pain.
"I feel lots of it pain and pressure on my whole right hand side and I am very anxious and I have a hard time breathing… and I sweat a lot and shake a little... and my heart beats fast," Paul says.
To avoid feeling the pain, he will ask his mother "Julie" to hide her hands under a blanket and order his father to keep completely still, legs uncrossed, hands placed symmetrically on both knees. His parents admit they live "like statues," so trained by Paul to minimize their movements.
"It's difficult to live this way, to see your son be preoccupied by everything," says Julie.
As a toddler, Paul would ask his parents to repeat sentences over and over; threw terrifying tantrums if objects were not placed in the right order. His parents tried disciplining him. But it didn't work. In fact, his behaviour grew more bizarre. By age five they started taking him to doctors in a desperate attempt to get help.
"You have to be a parent of a child with OCD to truly understand what is going on. Even in the first year we were wondering, what is happening to our son? What is taking over his life and ours? It really seems unbelievable," says Julie.
"The reason we went to specialists when he was five was we wanted early treatment so he wouldn't get entrenched and we didn't know it was OCD. We saw many psychiatrists and psychologists. They all tried their best," she says, trailing off shaking her head, indicating nothing worked.
Some specialists prescribed drugs that damaged Paul's heart and liver. Others put him in hospital for months at a time.
After 10 years of seeing doctors without success, Paul is trapped by distorted thinking. He can't play outside because there are birds, trees and other houses, on his left. He is too exhausted to go to school, his life hijacked by his bizarre symptoms. He can't even hug his parents, because they would touch him on his left, causing him pain.
"I've had OCD for so long I can't even think how it will be without having some," says Paul. "I can't imagine myself without the OCD. I don't know what that feels like."
He is not alone. Between 600,000 and 1.5 million Canadians will develop OCD at some point in their lives. It is the fourth most common mental disorder and among the 10 leading causes of medical disability worldwide. While some people live normally with mild symptoms, others are debilitated by the disease.
Gideon Goldman-Posluns, 23, was a normal university student and avid baseball player who developed a peanut allergy -- a legitimate health problem. But his worries about the condition snowballed into an obsession and then into severe OCD.
It started innocently enough. In 2009, he ate an egg tofu wrap before heading out to a baseball game. The snack contained traces of peanut and triggered an allergic reaction and a panic attack. Physically, Gideon recovered, but mentally, he was not the same.
Gideon feared everything he ate or touched or even inhaled might have traces of peanut.
"I was in prison in my mind because everything was contaminated and I had to be very safe and clean everything," he says.
He started washing his hands until they were raw. He wouldn't touch doors, opening them with his feet, obsessively washing even food packages. Eventually, he was eating only apple juice, Kraft Dinner and bread alone in his bedroom. It took him four hours to eat, fearing every bite would kill him.
His friends and family thought he could simply stop these odd behaviours.
"They said I was crazy and stupid and ‘Snap out of it, it's all in your head. It's not the truth and logical, you can tough it out.' Well, no, I can't," he says.
By July 2010, Gideon was near starvation, down to just 98 pounds. His father, Howard Posluns, feared for his son's life, yet was unable to find doctors and therapists who could pull his son out of his OCD spiral.
"I was getting bounced going from psychologist to psychologist. After the third psychologist, I realized that this was not the right route and I needed specialized assistance," says Howard.
Scouring the Internet, he found the Obsessive Compulsive Disorder Clinic at McGill University Health Centre, one of the few clinics specializing in OCD, and its director, clinical psychologist Debbie Sookman.
Gideon says that Dr. Sookman immediately recognized that his son's case was life threatening. Paul was admitted to Royal Victoria Hospital in Montreal and stayed for six weeks.
Unfortunately, patients like Gideon and Paul are quite common, says Dr. Sookman, who is also an associate professor at McGill University's Department of Psychiatry.
"Every day that goes by, there are sufferers who are not getting the hope they need and getting the help they need -- not able to go to school not able to work, not able to care for children, families, not able to leave the house. Patients who come into their home who have to strip and spend hours in the shower until they are tolerably clean," she says. "Untreated OCD, in most cases, is progressively worsening to the point of disability. The patient can't function."
OCD can be treated successfully, but too many people with OCD spend years unable to get proper help.
The problem, says Sookman, is there aren't enough specialized OCD clinics in Canada or therapists certified in the labour intensive treatment often needed. There are often long wait lists for treatment. Some provinces don't cover the therapy, opting to send patients to U.S. clinics.
That's why last fall, she founded The Canadian Institute for Obsessive Compulsive Disorders. Its mandate to increase the number of clinicians trained and certified in specialized OCD therapy in Canada. Forty top OCD experts worldwide are involved in the project. http://www.ictoc.org/
"The Canadian Institute for Obsessive Compulsive Disorders is a major mental health development in Canada in this field. It was desperately needed," says Sookman, who is the president of the organization.
She wants to "make sure over time, that children, adolescents and adults across Canada get the care that they need, specialized treatment, quickly and best practice because this is a disorder that requires very quick treatment to avoid unnecessary suffering, disability."
Treatment for OCD include medications to lower their anxiety or treat their depression. But drugs alone cannot cure the disorder.
Studies show the most effective treatment comes from within the brain. It is called cognitive behaviour therapy. Patients learn strategies to manage their anxiety. And when they are ready, they can start exposure response prevention therapy, in which they must face the very things they fear the most without performing any rituals.
Over time, anxiety diminishes as patients realize their worst fears never materialize.
"We are trying to help the individual with OCD to be less scared of their own thoughts, less scared of their own anxiety," says Sookman.
It is challenging, time-consuming therapy that often requires three-hour sessions and daily home visits over several months.
Sookman says she's treated some 7,000 OCD patients this way. One of her success stories is Lori Merling.
Today, Merling is an accomplished, ambitious university student. But at age 10, a family illness appeared to set off a firestorm of disturbing thoughts in Lori's young mind.
"I would lie in bed some nights when everyone was asleep (and think) ‘What if I take a knife and kill one of my parents in their sleep?' These were not things I wanted to do. That's why these thoughts were disturbing to me. It was scary."
Lori also began to fear parts of her personality would "escape" her body and "stick" on cereal boxes. As difficult as this is to comprehend, the fear of losing herself left Lori distressed, literally scraping her personality off of the box fronts and making swallowing motions to make herself feel whole.
She experienced an often misunderstood OCD symptom called "magical thinking" -- for example, believing stepping on a crack will literally break your mother's back.
"It's horrible… You realize what you're doing is nuts. It doesn't make sense in the real world. It takes on a life of its own and it controls you," says Lori.
But after seeing an American documentary on OCD, Lori diagnosed herself. With her parents' help, she was referred to the McGill OCD clinic, where she was treated with cognitive and exposure therapy.
"It was taking my greatest fears and putting them in front of me. Deal with the pain. It was scary and awful," she says.
But the intensive cognitive and exposure therapy worked. Lori now says she is cured.
"This is something I am proud of. It's an achievement. It's one of the greatest things I've ever achieved in my life, overcoming this disorder. I fought this battle and won," says Lori.
Lori is now studying to become a psychologist specializing in obsessive-compulsive disorder. She also volunteers with The Canadian Institute for obsessive-compulsive disorders and supports their mission of expanding specialized treatment centres for OCD.
"I want to do for other people what was done for me. I want to liberate others from this. I know it can be done. I am living proof," says Lori.
She says there aren't enough resources to treat all of those afflicted with OCD in Canada.
"The cost of not doing this is greater. The cost in suffering, unnecessary health care utilization, because they are not going directly to specialists," says Sookman.
But when patients can get treatment and follow-through, the results can be liberating.
Gideon is 18 months into his treatment. While he is taking some medication to control his anxiety, the therapy is helping him realize that he can open doors with his hands, and eat normally, as long as he avoids eating foods with peanuts. His therapy is far from over but he feels freed.
"I am able to eat. To do everything because of the medication and the specialized therapy. Yes, it saved my life," he says.
Paul is a little more than three months into his therapy. His parents say they can already see glimpses of the normal Paul within. They can move about the house freely, without worrying that if they are on his left, he will become panicked.
"He is less afraid of the fear the OCD creates in him. says his father David. "We're even starting to be a bit more relaxed," says his mother Julie.
"I was convinced nobody could help me. Nobody I saw before no one could help me," says Paul, who hopes to return to school in September.
"I think if I keep doing all my exposures and homework, I will keep getting better and better… I want to enjoy life."