This story highlights Canada’s first Intensive Residential Program for OCD prior to the COVID-19 pandemic. Currently, patients are being provided virtual care. Please see the Frederick W. Thompson Anxiety Disorders Centre website for more information.
“When I was eight years old, I remember sitting in my desk at school and I had a pen pointing towards me. I started to feel like that was dangerous for some reason and I remember turning that pen away from me. It’s the first concrete memory I have of my OCD,” says Nikki Murphy.
Obsessive compulsive disorder, also known as OCD, is a psychiatric illness that affects one in 40 people over the course of their lifetime. A person with OCD may experience repetitive intrusive, disturbing thoughts, images or impulses that cause anxiety. These obsessions are usually accompanied by compulsions or rituals that include repetitive actions or behaviours. According to the World Health Organization, OCD is among the top ten most disabling illnesses in the world.
“My OCD is really central to worrying about family and friends, like harm is coming to them, so doing what OCD told me to do, would help keep them safe,” she explains.
Over time, her OCD led to the belief that pointing anything at anyone would put them in harm’s way.
“All of a sudden I couldn’t point my fingers at people, eventually I couldn’t point my toes at someone, and by the end of that, I couldn’t point my tongue at people either. So that meant I couldn’t look at people when I was speaking and I’d either have to talk with my tongue curled backwards or curl my hands back which led to cramping in my arms, legs and my jaw,” she recalls.
Eventually, her OCD prevented her from being close to the people she loved.
“I couldn’t hug my family. I couldn’t kiss my husband or hold his hand. I couldn’t sit beside my loved ones or be in the same room as them,” she recalls.
Nikki says much of her OCD is rooted in superstition and in some cases led her to ‘knock on wood’, following the saying and superstition historically thought to prevent bad luck.
“I was knocking probably 500 to 600 times a day if I had a bad thought. At times these compulsions could take 18 hours a day,” explains Nikki.
Telling her family about her OCD
Throughout Nikki’s childhood, into her teens and early twenties, she lived with her OCD without seeking treatment. It would be 20 years before she told anyone about what she was going through.
“I was successful in school, went to university, and travelled. I thought I could handle it and I somehow pushed past things until the OCD just took me over,” says Nikki. “I didn’t have a choice but to tell my family.”
That turning point happened after a whirlwind of major life changes.
“I got married, bought a house, got a dog, and a new job all in a matter of six months – which is usually great for most people, but for someone with OCD it can be quite overwhelming,” explains Nikki.
“I thought I had it all together, then those changes happened so quickly. That’s when my OCD really started taking over.”
It was enroute to a family dinner that she reached a turning point in her journey.
“I had a breakdown in the car with my husband, everything just fell apart in that moment,” she recalls. “When I went to my family’s house, I just blurted it all out to my mom and my sister. It all came out and it was terrifying.”
“I’m glad I opened up. It was scary but it was empowering.”
Sunnybrook’s intensive OCD treatment centre
Nikki’s family helped her find treatment, including working with a psychiatrist.
Medication was also part of the treatment plan for her OCD and it helped for a time, but with severe OCD, further support was needed.
In January 2019, Nikki found herself taking part in the Intensive Residential Program for OCD at Sunnybrook’s Frederick W. Thompson Anxiety Disorders Centre.
“On the first day, I realized how cool it was going to be to sit around a table with other people with OCD, and not have to explain myself. I could just talk about my symptoms and everyone would understand,” she recalls with emotion. “I’m tearing up now, because living with OCD you can feel very isolated, and I isolated myself for 20 years. I felt like I was the only person on the planet. But sitting in that room and talking about it with others was so empowering.”
This program is the only intensive residential program for OCD in all of Canada and provides treatment and personalized care for up to 30 patients each year. Before the program was launched at Sunnybrook, patients with OCD had to seek similar treatment programs in the United States.
“This is a unique and innovative program in Canada that supports individualized and intensive treatment and care for patients with severe OCD,” says Dr. Peggy Richter, head of the Thompson Centre and director of the Clinic for OCD and Related Disorders. “In general, patients with severe OCD who complete residential programs often see a reduction in symptoms of 50 per cent or more.”
Patients and experts say the supportive environment, team-based approach by staff, and intensive program all contribute to their success.
Pushing against fear
Intensive cognitive behaviour therapy (CBT) is one part of the program, which takes a holistic approach to help provide support to patients and their families. CBT is an evidence-based treatment that helps patients learn skills to help manage their emotions, thoughts and behaviours.
In a typical day, patients attend various individual and group sessions.
For example, a session may include exposure response prevention (ERP) therapy which is a way to help patients manage their symptoms by exposing them to the objects, visuals or situations that cause anxiety and lead to ‘obsessions’.
“You’re pushing against your fears,” explains Nikki. “In some ways I know those fears aren’t logical, which is a really frustrating thing about OCD because the fear you have is so strong. For me, my OCD made me feel I had complete control over my family’s safety, which I know is not logical. So, with ERP you face those fears directly, and it can be scary, but it’s important to know that it is possible to fight those fears too. It takes time and a lot of hard work, and I continue to fight against my OCD, everyday.”
Eventually Nikki noticed a change.
“Holding your husband’s hand or hugging your parents, these are things many people take for granted. They’re things I did, until all of a sudden, I couldn’t because of my OCD,” says Nikki. “But then, with treatment and therapy, I was able to do those things but with some anxiety. As I continued therapy, the anxiety slowly went away. It was amazing.”
“The staff and clients here, everyone’s been so incredible and supportive – pushing you when you need it or consoling you when you need it. It’s been an amazing experience,” she adds.
Other programs throughout the day may include art therapy and yoga. The intensive residential program is tailored to the needs of individuals and can be up to 12 weeks, which may be followed by a day treatment, where patients are no longer living in residence but continue in treatment with staff to support the transition from residential to home.
“With mental health disorders, there’s a stigma,” says Nikki. “I think with OCD the stigma is often that it is associated with concerns around cleanliness, and that can be frustrating because there is so much more to OCD, and it is incredibly disruptive to your life.”
For Nikki, taking the courageous step of opening up to her family, and seeking treatment in the intensive residential program has led her along an incredible journey.
“I think opening up to my family, being honest and asking for help, was scary at first, but in reality, it was the biggest and strongest conversation I ever had with my family, and it just opened up my world,” says Nikki with a smile. “I always felt like I was stuck in this OCD rut. Now, I get to be with my family and hug them again. It’s like experiencing life for the very first time.”