Obsessive compulsive disorder (OCD) is a relatively common psychiatric disorder. It affects 1 in 40 adults and 1-3 in 100 children worldwide, and it can be disabling and distressing for both sufferers and their loved ones.

OCD consists of intrusive and troubling obsessive thoughts, urges, or impulses, and compulsive behaviors that people experience for multiple hours in the day. OCD can manifest in more than 300 ways, but some common themes center on fears of harm to self or loved ones, blasphemous religious or sexual  thoughts, contamination fears including contracting illness and being exposed to germs, and the need for things to be just right or symmetrical, said Dr. Jamie Feusner, chief medical officer at NOCD, an organization that provides evidence-based treatments for people with OCD and helps restore hope through education and awareness.

“People with OCD experience distressing emotions related to their obsession,” Dr. Feusner said. “These emotions can be anxiety, stress, depression, fear, disgust, or shame. To try and combat these feelings, people with OCD engage in compulsive behaviors, or compulsions, or avoidance. The compulsions can be mental – things that people do in their head, such as reassuring themselves, or counting, as some examples. Or, they could be physical compulsions where they do things to prevent bad things from happening. An example is checking to make sure the stove is off, or excessively washing your hands.”

To better understand OCD, we sat down with Dr. Feusner, who is also a professor of psychiatry at the University of Toronto and a clinician scientist at the Centre for Addiction and Mental Health, to talk about OCD, how it shows up in different people, and the causes, treatment, and side effects of living with it.

What are some of the causes of OCD?

We don’t know all of the causes of OCD, but we do have some ideas on what contributes to people developing it. It’s important to note that each person’s OCD may have developed in different ways than the next person. We have evidence from several studies that show genetics play a role. Genetics account for about 40% of the symptomology that people have, and the remainder is what happens to people throughout their life – their experiences. For example, stress and in some cases trauma can trigger OCD, and there’s evidence that perinatal trauma in some people might contribute to it as well. So, OCD is a result of both your environment and your genes, and typically develops in childhood or adolescence.

What are the signs and symptoms of OCD?

The truth is that a lot of adults with OCD can hide their symptoms pretty well, particularly when their compulsions are mental rather than physical. In some cases we even see adults hiding their compulsive physical behaviors from loved ones at home. People with OCD sometimes feel shame and fear that others may not understand the disorder, including not being able to “just stop it” since they typically know that their compulsions are not rational. As a result, and because it’s often misdiagnosed or the diagnosis is missed, many people live with OCD for a while – about 11 years on average – before they seek help and as long as 17 years before they actually get treated.

Typically we see with both adults and children, symptoms that include repetitive behaviors like checking, tapping, counting, and washing. Many experience horrifying thoughts. When you have OCD, your fears and worries are really intense. There’s a lot of emotion that goes with them, making the risks feel very real. The worst part is these emotions and thoughts keep coming back and get in the way of people functioning, which contributes to anxiety and depression as common problems that accompany OCD.

Are there differences between men and women, and how they experience OCD?

The prevalence of OCD among men and women is pretty equal. But there are slight differences in how men and women experience the disorder. For example, there is a type of OCD that has its onset in childhood that’s associated with tic disorders. That is more predominant in males. Men are also more likely to have OCD that is based on sexual, religious, or symmetry themes, while women are more likely to have contamination, washing, and checking themes.

How does OCD affect your mental health?

The emotions that people experience when they have obsessions can be really intense, and people’s ability to function socially, in work, or at school can be compromised.  As a result, 75% of people with OCD will also have major depression that is caused by the OCD. Adding to the distress that those with OCD experience, some will also develop general anxiety disorder and/or social anxiety disorder.

There are also some OCD-related disorders like body dysmorphic disorder, hoarding disorder, trichotillomania (hair-pulling disorder), and skin picking, as well as tic disorders or Tourette’s, that occur in people with OCD. Substance-use problems are quite common among people with OCD, affecting more than one-quarter of those who are treated for OCD. There are also physical problems that arise with OCD. People with OCD tend to have metabolic, obesity, and cardiovascular problems. For those who get treatment for their OCD, we see that their risk to develop these physical side effects goes down.

How is OCD diagnosed?

It starts with a clinical diagnosis by a clinician who is trained to identify OCD.  Standard diagnostic interviews help, as does an OCD-specific symptom severity scale that covers the different subtypes of OCD (contamination, hoarding, checking, etc.), to identify which symptom the person is experiencing.

What does treatment look like for OCD?

The treatment that we do at NOCD is called exposure and response prevention. As a gold standard OCD treatment, ERP is an evidence-based, specialized therapy that has consistently demonstrated excellent outcomes in the treatment of OCD. We have found ERP therapy can result in a 43%  reduction of OCD symptoms. This might not sound like a lot, but for most people, 43% reduction in symptoms can take them from being disabled to being able to function in society.

OCD is a chronic condition, so the symptoms don’t typically go away on their own, and for most the symptoms do not go away 100%. But you can get to a point where the symptoms are minimal, especially with exposure and response prevention, and often in combination with medication. 

Exposure and response prevention treatment helps people with OCD be able to habituate or desensitize to the triggers for OCD and the emotions that go with it. It includes exposures (facilitated by a therapist) and helps people identify and then gradually reduce and eliminate the compulsive behaviors in their day.

In adults, exposure and response prevention or medication is typically the first line of treatment, and many benefit from both. Medications like fluoxetine (Prozac), escitalopram (Lexapro), fluvoxamine (Luvox), or sertraline (Zoloft) are often used and can be effective at high doses. With children, we start with exposure and response prevention.