OCD: the doubt disorder

Too often underestimated, obsessive-compulsive disorders affect many people who do not have access to appropriate treatment.

Too often underestimated, obsessive-compulsive disorders affect many people who do not have access to appropriate treatment.

It is hard to believe that some people cannot leave their flat without taking a photo of the lights out. Then they go back in to check that nothing has been left on. They leave, then go back again, sometimes for hours on end. We cannot imagine that some people can spend seven hours a day in the shower, eight hours cleaning, going as far as removing the skirting boards, for fear that there might be dust underneath. Much remains to be understood about obsessive-compulsive disorder (OCD), which affects 2% to 3% of the population. “That is actually quite a large percentage of the population,” says Julien Elowe, physician in chief of the Service of Psychiatry at Lausanne University Hospital (CHUV). “In comparison, only 1% to 2% of people have schizophrenia. But people talk about it more.” OCD is divided into two parts.
There is the obsession, an often intrusive, persistent thought, and the compulsion, a behaviour that the individual puts in place to cope with the anxiety caused by the obsessive thought. “I often say to my patients: what you’re going through, everyone goes through, but for you, it’s out of control.”

From routine to illness

But how do you know when a ritual, habit or routine becomes OCD? It took Margaux*, age 40, a long time to understand what the problem was. “Even as a child, I used to perform little rituals, especially involving superstition and magical thoughts. I would often make the sign of the cross to prevent anything bad from happening.” Her excessive anxiety led the family to see a child psychiatrist, who did not pick up on anything unusual. Later, at the age of 19, her OCD took a significant turn for the worse due to stress over her final exams. “I would spend several hours a day cleaning. I then saw another psychiatrist who made a diagnosis, but because he wasn’t specialised in treating OCD, he just prescribed a high dose of antidepressants. I no longer had OCD, but I was suffering terribly from the medication’s side effects.”

Despite her disorder, the young woman managed to study and train as a teacher. Covid-19, and the restrictions to prevent the spread of the virus, marked a turning point. “Being on lockdown at home, where my OCD comes out the most, was really tough. And I no longer had access to the treatments I was taking.”

Limited treatment options

OCD affects young people. The median age is 19, and the behaviour starts before age 10 in 25% of cases. But the disorder is often identified too late. This was the experience of Agathe Gumy, founder of the organisation Tocs Passerelles. Her daughter suffered from OCD. “When the disorder was first identified, I knew absolutely nothing about it. And at the time, there was no information online about OCD in Switzerland. Even today, there are no specialised centres or hospitals in French-speaking Switzerland.”

People with OCD often don’t know where to turn and feel ashamed to talk about it. This is also the case for Margaux*, who still spends eight to ten hours a day doing housework and performing other rituals. “My biggest phobia was that I’d be locked up, that people would think I was crazy. In addition to spending an enormous amount of time cleaning, I spend two to three hours a day making mental lists, and if I’m interrupted, I have to start all over again to check that everything in my life is in order.”

The time-consuming aspect of OCD is a tremendous struggle and can make it impossible to have a social or professional life. “I’ve never talked about it at work. I had to cut back my work time to 60%, and I was constantly ashamed of myself for looking so exhausted even though I was only teaching part-time. Then my fatigue got so bad that I had no choice but to take a leave of absence.”

Julien Elowe also says that there are not enough specialised facilities. “Outpatient treatment is largely inadequate. Ideally, we should be able to provide intensive treatment.” Agathe Gumy chose this solution when her daughter tried to commit suicide because her condition had become so unbearable. “We went to the Clinique Lyon Lumière in France, which has a department specialised in treating OCD. But at the time we didn’t know that it was recommended to continue treatment with psychotherapy.”

Currently, the best way to support people suffering from OCD is exposure and response prevention. This behavioural psychotherapy technique consists of confronting patients with the situation that triggers the OCD, encouraging them to resist the ritual they usually perform. In her role with Tocs Passerelles, Agathe Gumy receives one to four requests a day. The organisation offers solutions for better understanding the illness and refers people with OCD to specialised therapists.

It also holds round table discussions. “When I heard another participant talk about their experience, I couldn’t hold back my tears,” Margaux says. “For the first time, I realised that OCD is an illness.” Agathe Gumy believes that healthcare professionals urgently need to be informed and receive training on this condition, particularly paediatricians. “OCD is not difficult to diagnose, and it is vital to treat the disorder before it becomes too serious.” To broaden her treatment options, Margaux wants to undergo psychedelic-assisted therapy. “I had my first appointment at Geneva University Hospitals last October, but my application is still pending.” Waiting is a challenge, given the urgent need to return to bearable living conditions and get back to work. /

* Not her real name