Illustration by Shelagh Armstrong-Hodgson | Photography by Kevin Van Paassen and Doug Nicholson
It started with a feeling – a worry that something bad might happen to her family.
At the time, Charlotte Simmons was only eight years old and didn’t think much of it. As she got older, the worry turned to fear. Things worsened when she went away to university.
“I’ve always had anxieties about my parents going out or my sister going away,” says Charlotte. “My irrational thinking made me believe that someone was going to die or someone would get into an accident.”
To prevent bad things from happening to her family, Charlotte developed rituals, convinced that executing them with precision held the key to her family’s safety. “I believed that if I didn’t carry out certain routines and if I didn’t tap specific items or repeat actions in a specific order and sequence, something bad would happen. There was really no rational thinking.”
With numerous rituals, which sometimes needed to be repeated hundreds of times, it would often take hours for Charlotte to leave the house. “I never understood what people meant when they said, ‘You’re always going to have OCD. You’re just going to learn to live with it.’ I thought, How am I going to lead a fulfilling life while doing 13-plus hours a day of rituals and routines? I’m never going to live a normal life.”
Her family tried to get her help, but without any luck, recalls Charlotte. “My mom had been trying so hard, contacting anyone who might be able to help. We paid for private therapists. I had help from local therapists. We travelled for more focused day programs. I tried many different kinds of medication, but nothing was working.”
Feeling hopeless, Charlotte attempted suicide and ended up in hospital. A month later, she was one of the first patients enrolled in the new intensive residential treatment program for severe OCD at Sunnybrook’s Frederick W. Thompson Anxiety Disorders Centre.
“I felt a huge sense of relief,” says Charlotte. “I just knew in my heart it was going to work. I knew how desperate I was. I knew how many treatments I had tried that didn’t work. So, I said to myself, intensive therapy and residential treatment are the only things I haven’t tried, so this has to work.”
OCD is a psychiatric illness that affects 2.5 per cent of the population, or one in 40 people, over the course of their lifetime. A person with OCD experiences obsessions, which are intrusive and disturbing thoughts, images or impulses that continue despite efforts to stop them. Obsessions are often accompanied by compulsions or rituals that include repetitive actions or behaviours. The World Health Organization has recognized OCD as the 10th most debilitating medical condition worldwide.
“Approximately 25 per cent of OCD patients are people with refractory OCD, where it doesn’t respond to multiple treatments,” notes Dr. Peggy Richter, head of the Thompson Centre and director of the Clinic for OCD and Related Disorders. “People with severe OCD have often been languishing at home with no access to specialized services.”
Officially launched in 2017, the Thompson Centre’s residential treatment program currently offers intensive and individualized care annually for up to 20 patients with refractory OCD.
On a typical day, the programming for residents runs from 9 a.m. to 4 p.m. Charlotte would have two classes a day focused on cognitive-behavioural therapy (CBT) and other types of therapy. Four hours of each day are spent with therapists and coaches working on the client’s specific needs. After 4 p.m., clients had their own homework to do, which would often involve practising to fulfill the exposure and response prevention (ERP) therapy goals established during the day. In ERR the person is exposed to a situation that triggers anxiety but is urged to not follow through with the usual compulsive rituals.
For Charlotte, that meant saying phrases that brought out her worst fears. “I would have to say something like ‘My sister is going to get in an accident.’” Though difficult, going through these “exposures” eventually helped her confidence grow and she became less anxious about similar scenarios over the course of the program.
“It was really distressing, but if you’re not feeling that distress, then you’re not getting the full benefit of the therapy,” explains Charlotte. “The point is to feel that distress and, over time, I would get used to it.” Even just being away from home was an incredibly challenging exposure for her, Charlotte admits, but being in the residential program and having structure to her day helped her face her fears.
“You have to work hard. It can be frustrating, but you just have to keep fighting it,” she says. “There was a lot of support and it was a comfort knowing someone was always there. Everyone was so well trained. Everyone was so kind, so understanding. I never felt judged.”
“Canadians have not had this kind of treatment available to them,” says Dr. Richter. “Until the launching of the Thompson Centre, Canadians had no access to programs like this unless they went to the United States.”
Before this innovative program, only a handful of patients were able to receive OHIP funding to attend similar types of treatment programs based in the United States. Since then, the funds have been diverted to the creation of the intensive residential treatment program for OCD at the Thompson Centre. The program provides intensive CBT, which is part of a holistic and team-based approach that also helps families to support recovery. As well, patients may be able to attend the day program and participate in therapy five days of the week.
“Teamwork is essential,” says Dr. Marlene Taube-Schiff, team lead for the new OCD treatment program at the Thompson Centre. “Our staff expertise involves a diversity of disciplines, including psychiatrists, a psychologist, occupational therapist, social worker and a mental health clinician.”
Residential treatment has been shown to provide a safe and therapeutic environment to help ensure that the most effective care is being delivered to individuals with treatment-resistant OCD. “CBT is delivered intensively for about three to five hours daily, either individually or in a group,” explains Dr. Richter.
“This is supplemented by mindfulness, along with elements of acceptance and commitment therapy, which helps a person see that behaviours can be shaped or changed with therapy. Dialectic behaviour therapy, a form of CBT which focuses on accepting a person’s thoughts, is also incorporated. There is also occupational therapy and regular social work groups focusing on relationships and communication.”
Individuals with severe OCD who complete residential programs often see a 50-per-cent reduction in symptoms or better. Experts attribute this to the intensity of the treatment and the individualized approach to CBT, along with the therapeutic nature of the setting and being surrounded with support from staff and other patients.
“The majority of our clients have referred to the importance of being in an ‘OCD community.’ They feel less alone and [feel] validated in the symptoms they have been experiencing for so long, but perhaps have never shared to this extent,” notes Dr. Taube-Schiff.
While there isn’t specific data linking the community impact to patient outcomes, it’s something Charlotte agrees with. “There was never any feeling of judgment,” says Charlotte. “It was the most comfortable I’ve ever felt and also the first time in as long as I can remember that I finally felt like I was living.”
In just a short time, the program is making a big difference.
As word of the Thompson Centre continues to spread across Canada, so too does the wait list. With financial support from donors, the hope is to expand the facility and build a more extensive program for day patients, as well as more residential programming. “As we see the benefits that this kind of treatment approach can offer, we are hopeful we will enlarge the program in years to come and find a way to sustainably fund it,” says Dr. Richter.
For Charlotte, a huge turning point was making the decision to join the group for a walk to a local coffee shop. When first asked to go, she froze and said, “No, I can’t. I can’t.” After giving it a bit of thought, she reconsidered.
“I realized that the longer I put it off, the worse it was going to get. I thought, Why else am I here? Let’s go, let’s go before I change my mind!” Charlotte recalls, laughing.
“She’d been with our program two weeks and she had yet to walk more than 15 to 20 feet without extensive rituals,” remembers Dr. Richter. “The look of joy on her face when we actually got off the property was a beautiful thing to see.”
Charlotte is just one of the Thompson Centre’s success stories and, these days, she can be found making dinner for her family, trying new recipes, using the computer or going outside to walk her dog. All of these are things that, before the program, she either didn’t do or would have taken hours of rituals in order to do.
“Just being able to go out spur of the moment, being really spontaneous, waking up and being able to say, ‘I’m going to the dog park today,’ has been a really big change for me,” she says with a smile.
The effort doesn’t end when a person leaves residential treatment, she adds. In fact, she continues to work hard every single day and now understands that with the right supports, one can, in fact, learn how to live with OCD.
“It’s important to know that you can live a good life,” says Charlotte. “You can live a very normal life with OCD. It’s always going to be a challenge, but you have to keep fighting.”