From Oct. 11 to 17, Canadians are marking OCD Awareness Week, an annual campaign aimed at increasing understanding of obsessive-compulsive disorder (OCD) and breaking down the stigma surrounding the condition.

OCD affects approximately 2 million of the world’s population but there are few specialists in the disorder, says the International OCD Foundation. 

The average wait time to get a diagnosis of OCD is anywhere from nine to 17 years from when symptoms develop says experts from OCD North.

The disorder presents as intrusive, obsessive thoughts that trigger anxiety. That anxiety causes extreme discomfort in the person with the disorder. In order to make the anxiety stop, a person develops repetitive behaviours or compulsions.

Social worker, Merrisa Little recognized the gap in the care for the misunderstood disorder while studying in grad school.

“I found the disorder fascinating in how complex it was, and when I looked up how it is treated and who is doing this treatment, I was flabbergasted at the gaps, and the treatment looked very exciting from a therapeutic perspective,” said Little.

From this discovery of the lack of treatment for the disorder, Little went on to found the group OCD North in 2018, a collection of clinics across Canada that specialize in the “gold standard” of OCD treatment.

“The treatment is called Exposure with Response Prevention or ERP. In its most simplest form, we teach our clients how to face that fear, and they learn over time that OCD no longer needs to have a hold over [them]. That OCD is wrong and [they] don’t need to be afraid of this thing.” 

Little says that OCD is ripe with misconceptions, especially when it comes to the disorder having benefits.

“We hear people saying ‘I’m so OCD’ all the time. When we hear that, we assume the person is saying that there is a benefit to it – ‘I’m so clean, I’m so organized,’ but what’s not talked about is the scary thoughts behind the disorder that make that individual behave in the way that they’re behaving.”

The drive behind the behaviours that seem to be commonly thought of as being positive, such as being particular about the organization of things, is actually anxiety that is terrifying. 

“There’s not enough about what actually drives OCD, and it’s not at all a benefit to have the disorder. I wouldn’t wish OCD on my worst enemy.”

The disorder can continue to evolve until the compulsions quit quieting the anxiety.

“It’s relentless, the pestering and the distress. There gets to a certain point where compulsions stop working because the disorder is so advanced.”

According to Little, many patients with OCD feel a “drive” to perform related to their anxiety and compulsions – and plenty do not want to lose that part of them. It can sometimes come up as a barrier to seeking treatment.

“OCD is an ego dystonic behaviour, meaning we don’t want to have the thoughts – they are inconsistent with who we are and our values. That drive, that get-up-and-go – that is part of the person, it is not ego dystonic, so we can’t lose that.”

The change, with treatment, is to move the positive behaviour responses that a person doesn’t want to lose from being fear-based.

“We go from doing these things out of fear to doing them because we want to do them. Because they serve a purpose in our lives generally.”

The ERP treatment Little does at her clinics has an efficacy rate of about 75 per cent to 80 per cent, Little claims. 

Little says that the greatest barrier to treatment is taking that first step to make a phone call and see someone. 

“The most courageous step is that very first phone call to get help and treatment. OCD is at its most simplest form is fear based.”

The root cause of OCD is still unknown. There is still research being conducted into what causes it and how.

“There is a genetic component and there is also an environmental component. There’s a narrow cortisol cortical loop in the brain that new research is exploring that might be responsible for OCD. But to date, nobody truly knows what causes it.”

Little says that it is important to learn more about OCD in order to support those who have it and reduce stigma.

“[We] should start conversations that replace stigma with understanding. Recovery is possible, but those individuals suffering need to know that recovery is possible.”