8.5 million people are estimated to be living with OCD in the United States. Globally, that number is thought to be as high as 200 million. That’s roughly the population of Brazil, the world’s seventh most populous country.
But despite the sheer number of people with the condition, only a tiny fraction of people with OCD actually begin evidence-based treatment to recover from it. As things currently stand, millions will never receive help, and millions more will endure years of distress and disruption to their lives before accessing effective care.
One recent study found that, on average, people with OCD live with their symptoms for nearly 13 years before receiving an accurate diagnosis. So what’s going wrong here? There are a few things at play, but high on that list is the likelihood that a person presenting with OCD symptoms will be told they have another condition and treated with the wrong form of care—this is known as misdiagnosis.
This article will examine why so many with OCD are misdiagnosed, the key features differentiating OCD from anxiety disorders and other conditions it’s commonly mistaken for, and the stigma and shame that often keep people from talking openly with providers about their experience.
Challenges in diagnosing OCD
OCD is acutely misunderstood among the general population. People calling a preference for order or cleanliness “a little OCD” is just one way this lack of familiarity can show up. The reality is that OCD is a serious mental health disorder characterized by obsessive thoughts, fears, urges, feelings, sensations, and images that cause intense distress.
This distress provokes people to engage in compulsions—physical or mental behaviors done to feel better or keep something “bad” from happening. However, by engaging in these behaviors, people with OCD unwittingly feed a vicious cycle, reinforcing their fears and compulsions over time.
Widespread misunderstandings about the condition keep millions with OCD from seeking help. But even those who manage to share their symptoms with a provider only have around a 50/50 chance of their OCD being correctly identified, according to research.
It doesn’t end there, though. The probability of an accurate diagnosis falls off a cliff when symptoms stray from those focused on contamination, symmetry, order, and checking themes. The previously mentioned study showed that themes relating to sexuality, aggression, and pedophilia are misidentified 84.6%, 80.0%, and 70.8% of the time, respectively. This suggests that the unfamiliarity with OCD’s true nature isn’t confined to the general public, but also impacts mental healthcare providers themselves.
Why is OCD misdiagnosed so often?
“Believe it or not, a lot of practicing therapists have never taken a course on OCD,” says Dr. Patrick McGrath, Chief Clinical Officer at NOCD. “Most likely, OCD would have been included only as part of the general overview of mental health diagnoses, and they never had a specific lab on it. All too often, parts of training are: ‘Here’s the therapy we do; we apply it to everything, and it should work.’ And that’s not the case.
“As a result, I’ve heard about therapists saying things like, ‘Well, I see your house is messy, so you can’t have OCD because people with OCD always have tidy houses.’ Suppose a therapist thinks that OCD is only about putting things in order or fears about contamination. In that case, they’re unlikely to identify harm OCD, relationship OCD, pedophilia OCD, and other subtypes correctly—a situation that’s been demonstrated in several studies.”
The main consequence of OCD’s wide range of symptoms is that the condition is often misdiagnosed as a generalized anxiety disorder (GAD), attention deficit and hyperactivity disorder (ADHD), and various personality disorders. When OCD co-occurs with other conditions, identifying it gets even more complicated, as up to 90% of people with OCD also struggle with another mental health condition.
Regrettably, the standard approaches to care for other conditions are generally ineffective for OCD, and can sometimes make symptoms worse. Providers may also have challenges with overlapping symptoms of comorbid conditions like major depression, social phobias, or eating disorders, which co-occur with OCD in around half of all cases. The resulting “dirty data” misrepresents the prevalence of OCD and hampers the ability of insurance companies to provide coverage for evidence-based OCD treatment.
“Until recently, insurers didn’t understand how effective OCD treatment is, because they weren’t seeing OCD come up in their claims data,” says McGrath. “When we [NOCD] showed them that members were showing up—and recovering—at ten times the rate of claims for OCD, they were taken by surprise. This disparity meant that people were either not getting any treatment at all, or getting treatment for the wrong thing because they’d been misdiagnosed.”
The consequences of misdiagnosed or untreated OCD
Untreated OCD can profoundly impact various aspects of a person’s life. Obsessive thoughts and compulsive behaviors associated with OCD can disrupt work, school, relationships, and daily activities, resulting in difficulty concentrating, decreased efficiency, and strained social connections. People with misdiagnosed OCD very often experience intense guilt, shame, and self-blame, impacting their self-esteem and leading to isolation.
Additionally, untreated OCD increases the risk of developing other mental disorders, including depression, generalized anxiety disorder, panic disorder, and substance abuse, due to the chronic anxiety and distress it can cause.
Rates of suicide among people with OCD are ten times higher than in the general population. More than a third (36%) of OCD patients have suicidal thoughts, and over one in ten (11%) attempt suicide over their lifetime.
Accurate diagnosis leads to effective treatment
“Addressing this misidentification problem allows people to get the help they need,” says Dr McGrath. “Not only will this obviate so much suffering, it will literally save lives.” The non-pharmaceutical, evidence-based help that has been shown for decades to lead to long-term recovery from OCD is called exposure and response prevention therapy (ERP).
The “exposure” part of ERP involves deliberately confronting the situations, thoughts, sensations, feelings or images that trigger anxiety or distress. Done in a controlled and supportive environment, it’s akin to dipping a toe in the water before diving in. The “response prevention” part of ERP is perhaps even more important, and involves resisting the urge to engage in the compulsions that you would typically do to alleviate discomfort. This is crucial in breaking the relentless cycle of obsessions and compulsions. You simply cannot think your way out of OCD; you need to behave your way out of it.
You’ll progress through more difficult exercises as you gain confidence in facing your fears. But like any skill, practice is essential. Repeated exposures and response prevention help rewire the brain’s response to triggers, strengthening your ability to manage and reduce your symptoms long-term.
You deserve an accurate diagnosis and proper treatment
If you think you might have OCD and are interested in receiving an accurate diagnosis that puts you on the path to recovery, please know that there’s hope. OCD remains widely misunderstood, even among mental healthcare providers, but it’s also highly treatable.
You can start your recovery journey today. Every NOCD Therapist receives specialized, intensive training in diagnosing and treating OCD, and we accept most major insurance plans to help you access the care you deserve. In your first session with a NOCD Therapist, you will receive a diagnostic assessment to determine what the very best course of treatment is for you. I encourage you to learn more about NOCD’s evidence-based, accessible approach to OCD treatment today.