Having obsessive-compulsive disorder means living day in and day out with obsessive thoughts and fears you need to contend with. It could manifest in a fear of germs and illness, or a fear of harming oneself, religious obsessions, or countless other forms — plus the compulsions or repetitive rituals that sufferers engage in to deal with their distress. But just how common is OCD?
We spoke with Dr. Jamie Feusner, Chief Medical Officer at NOCD, to gain a clear picture of how common OCD is and who gets OCD. Here’s what we learned.
OCD is more common than you think
Research suggests that over the course of their lives, an estimated 2.3% of the population, or 1 in 40 people, will develop OCD, and that 1.2% of people have OCD in any 12-month period.
OCD is defined by two key symptoms: obsessions and compulsions. The obsessions are a series of intrusive and unwanted thoughts, ideas, or urges. To cope with the distress they cause, people feel compelled to engage in certain behaviors or repetitive mental acts, known as compulsions. But unfortunately any relief they feel is temporary, which is why OCD often feels like a never-ending cycle.
Though current estimates provide us with a pretty good idea of how common OCD is, there are obstacles that get in the way of generating an even more reliable number. Here are three significant challenges:
#1: Mental health stigma keeps people from sharing their symptoms
Though the public perception of mental health is improving, negative stereotypes are still common. Those with mental health conditions may experience self-stigma or “internalized stigma.
Self-stigma can cause people with mental health conditions to conceal their symptoms and experiences. If self-stigma is causing patients with mental health conditions not to discuss their symptoms, studies on the prevalence of those conditions will end up underestimating how common they are.
Given that OCD often centers around taboo or stigmatized topics, and people with OCD are sometimes falsely portrayed as violent or dangerous, self-stigma most likely impacts studies on the OCD population. For example, one study found that 75% of people with OCD said they “felt ashamed of [their] problems.”
#2 Assessment tools aren’t always reliable
To assess how many have a condition, you need a tool that will reliably tell you who does and does not have it. But when it comes to mental health, this isn’t so easy.
When doctors look for many non-psychiatric conditions, like heart disease or cancer, they don’t just base their determination on a verbal description of symptoms. Instead, they can also rely on “biological markers” of these conditions. However, as Dr. Feusner notes, “for all psychiatric disorders, there is no objective ‘biomarker’” that gives it away.
The DSM is the handbook used by healthcare professionals in the U.S. and much of the world as the authoritative guide for diagnosing mental health conditions. Despite its widespread use, it has its limitations. “The DSM criteria are not perfect in their ability to detect OCD and might result in misdiagnosis,” says Dr. Feusner. One reason why is that their descriptions are incomplete. The fact that OCD has so many subtypes, each with many varieties, further complicates matters. Interviewers who are asking questions of study participants may not have a full understanding and interpretation of the disorder. “This seems to be particularly true for intrusive obsessive thoughts having to do with violence, sexual themes, religion, sexual orientation, or relationships.”
Put simply: Because guidelines like the DSM are imperfect tools, certain people with OCD may go undetected in studies of its prevalence.
#3 Sometimes people have “mild” or subclinical OCD that isn’t accounted for
OCD is not an all-or-nothing condition. The symptoms that characterize it exist on a spectrum, meaning it’s possible to experience them to various degrees. For example, some people might spend more time obsessing or engaging in compulsions than others.
Notably, according to the DSM, engaging in some obsessions or compulsions alone does not mean that a person meets the criteria for an OCD diagnosis. For example, obsessions or compulsions must be time-consuming or cause clinically significant distress and/or impairment in social, occupational, or other important areas of functioning. This means one can actually both experience obsessions and engage in compulsions and still not be diagnosed with OCD. Researchers often refer to this as “subclinical OCD.”
While around 2% of people meet the diagnostic criteria for OCD in their lifetime, this figure may be much higher for subclinical cases. For example, the same study found that more than a quarter of respondents reported obsessions or compulsions at some time in their lives.
This matters because these individuals may still be affected by some OCD symptoms, even when they’re not severe enough to warrant a diagnosis. These experiences could still interfere to a certain degree with their ability to function.
Moreover, OCD can start out at subclinical levels. With some exceptions, people typically don’t go from experiencing no symptoms one day to meeting diagnostic criteria the next. Experts have argued that when symptoms are caught early, treatment like exposure and response-prevention (ERP) therapy theoretically may work as a preventive measure. As a result, it’s important for both clinicians and the general public to be aware of subclinical OCD and how to identify it.
Is OCD becoming more common?
According to some studies, the number of OCD diagnoses has increased over time. For example, one study found that reported OCD diagnoses have increased in Denmark, Finland, and Sweden compared to the 90s.
But does this mean OCD is actually becoming more common over time? “I do not believe the field knows the answer to this question,” says Dr. Feusner. He points to several factors that may explain why reported diagnoses are increasing even though the number of people with OCD isn’t. Specifically, he suggests that the public has become more aware of OCD, and mental health professionals are better trained at identifying OCD and its subtypes. “The field of mental health and health care in general perhaps have gotten gradually, but only slightly, better at diagnosing OCD,” he says. “However, the lack of awareness and understanding still remains a significant problem.”
Of course, environmental stressors can impact rates of OCD symptoms and diagnosis. For example, a recent review concluded that both people with and without OCD before the pandemic showed increased symptoms of OCD throughout it, especially those who engage in compulsive handwashing and cleaning. In this sense, OCD, or at least the prevalence of obsessions and compulsions, can become more common for a period of time due to the presence of environmental factors that trigger new OCD symptoms or intensify existing ones.
No matter what the triggers, though, the important thing is for people to recognize they don’t have to suffer without help. Effective treatment exists.