Researchers estimate that in the US alone, 8.5 million people are living with Obsessive Compulsive Disorder (OCD), and only a small fraction of this number are receiving the treatment they need to get better. As the situation currently stands, millions will never receive help, and millions more will endure years of distress and disruption to their lives before overcoming barriers to normal daily functioning with effective, evidence-based care.
One recent study found that, on average, nearly 13 years separate the onset of OCD with its proper diagnosis, and a further 1.45 years elapse before a diagnosed patient begins treatment. These statistics are particularly tragic when you consider that exposure and response prevention therapy (ERP) can reduce the disorder’s symptoms in a matter of weeks in most cases. For anyone who knows the dire and sometimes deadly impact that OCD can have on sufferers’ lives, the situation is tragic and unacceptable.
In this article, we’ll take a look at why so many with OCD are undiagnosed or misdiagnosed, and how mental health care providers can save lives by becoming more familiar with how the disorder manifests, the key features that differentiate it from anxiety disorders and other conditions, and the stigma and shame hampering people’s ability to talk candidly with providers about their experience.
Challenges in diagnosing OCD
OCD is acutely misunderstood among the general population. People attributing a preference for order or cleanliness to being “a little OCD” is just one way this lack of familiarity can show up.
To be clear, OCD is a serious mental health disorder characterized by obsessive thoughts, urges, and images that cause untenable anxiety levels. This distress provokes people to engage in compulsive behaviors—physical and/or mental—that are intended to relieve that anxiety. Avoidance, checking, reassurance-seeking, and other compulsions can and often do temporarily reduce that anxiety. However, by engaging in these behaviors, people with OCD unwittingly strengthen and perpetuate a vicious and potentially deadly cycle, reinforcing their fears and compulsions over time.
The diagnostic criteria for OCD include the presence of obsessions and compulsions that take up more than an hour per day, cause distress, and/or impair normal daily functioning. This distress and functional impairment gets overlooked when the disorder is portrayed in the media as nothing more than a quirk or casually tossed into joking conversation.
Given the widely held conception of OCD as a relatively benign quirk, it’s easy to see why someone who feels unable to leave their house for fear of being struck by a car or is having random, distressing thoughts about stabbing a loved one might have difficulty identifying their experience as OCD.
Up to a third of people with OCD have reduced insight into their condition and often struggle to recognize that their obsessions and compulsions are irrational or excessive. This lack of awareness can make it challenging for them to seek help or engage in effective treatment. They may dismiss suggestions for therapy or medication, believing that their concerns are valid and reasonable. They may also refrain from sharing their experience with their physician or therapists due to the deep shame they feel about obsessions that are violent or sexual.
Reduced insight and the related shame that results from it keeps millions with OCD from seeking help. But even those who manage to share their symptoms with a provider have around a 50/50 chance of their OCD being correctly identified, according to research.
However, the probability of an accurate diagnosis falls dramatically when symptoms stray from those focused on contamination, symmetry, order, and checking themes. One 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 impacts the clinical community as well.
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 comorbidity rates of OCD and other psychiatric conditions are as high as 90%.
Regrettably, the standard care for each of these other conditions can make OCD symptoms much worse. Providers may also have challenges with overlapping symptoms of comorbid conditions—major depression, social phobias, or eating disorders co occur with OCD in around half of all cases. The resulting dirty data misrepresents the prevalence of OCD and hampers insurers’ ability to provide coverage for ERP, the gold standard therapeutic treatment for OCD, exacerbating the situation on a systemic level.
Consequences of undiagnosed, misdiagnosed, and untreated OCD
Untreated OCD can have a profound impact on various aspects of a person’s life. The 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. Misunderstandings about OCD may strain relationships, leading to conflicts and a lack of support from loved ones, further exacerbating emotional distress and isolation. Those with undiagnosed or misdiagnosed OCD may experience feelings of guilt, shame, and self-blame, impacting their self-esteem and self-worth. 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 causes.
Increased risk of self-harm and suicide
While people with OCD often experience ego-dystonic obsessions related to causing harm, they very rarely harm others. However, self-harm is a prevalent aspect of OCD and is seen in approximately 7.43% of patients. Often the harm is incidental. For example, excessive washing with irritant substances like disinfectants can lead to conditions such as atopic dermatitis.
Between 9% and 35% of OCD patients seek treatment for skin-related complications. Less common self-harm behaviors include self-cutting and chemical burning. They are more likely linked to low self-esteem, complicated family dynamics, and difficulty managing emotions.
Rates of suicide among people with OCD are ten times higher than in people without the condition. More than a third (36%) of OCD patients have suicidal thoughts, and over one in ten (11%) attempt suicide over their lifetime. Developing comorbidities like major depression and substance abuse, severe symptoms, functional impairment, stigma, and a delay in appropriate treatment are major contributing factors to OCD’s deadliness.
The role of mental health providers like you
Understanding key behavioral and psychological indicators of OCD is fundamental to identifying the condition and preventing the dire consequences we’ve examined.
As we’ve seen, differentiating OCD from other anxiety disorders and related conditions is a serious challenge that mental health providers face. Through comprehensive assessments and careful evaluation, they can reduce the incidence of misdiagnoses and make targeted treatment a possibility.
Additionally, providers must remain vigilant for red flags suggesting undiagnosed OCD in people presenting with symptoms that may be misconstrued or overlooked. The ability to do that often depends on establishing trust and rapport with people who may be reluctant to disclose their OCD symptoms due to shame or fear of stigma—particularly when their obsessions are taboo. By fostering a supportive atmosphere, providers can encourage open communication and ensure patients feel understood and accepted.
There are several ways you can make a difference today for the OCD community, including people currently in your care. If you’re working with a patient who may require specialty treatment for OCD, you can refer a patient to us directly by filling out a brief form. We accept most commercial insurance plans, offer evidence-based OCD treatment, and usually have availability within seven days. And if you’re accepting new patients, we encourage you to join the NOCD referral directory to help people with OCD access the additional care they may need while in ERP therapy.
By learning how to recognize OCD, the many ways its symptoms can present, how it’s treated, and where to go for effective care, providers can break down historical barriers to treatment and help people overcome this widely misunderstood, often debilitating, and sometimes deadly condition.