Myths & Facts: Obsessive-Compulsive Disorder

Many people have heard of obsessive-compulsive disorder (OCD), but few really understand what it is. In fact, despite its prevalence, OCD is one of the most misunderstood health conditions, and many people have ideas about it that simply aren’t true. According to Nystrom and Associates, a group of professional care providers, the disorder is commonly stereotypically portrayed, and misused catchphrases from individuals who don’t understand it minimize OCD as a mental health condition.¹

But, OCD is not a mental health condition; it’s a chronic anxiety disorder that causes people to experience unreasonable, uncontrollable or recurring thoughts followed by a behavioral response. The repeatedly obsessive thoughts cause anxiety that results in repetitive behaviors. And the behaviors persist due to “operant conditioning,” which means the compulsions, or behavioral responses, reduce anxiety. In fact, the responses are so effective, they negatively reinforce the behavior.²

According to BeyondOCD.org, OCD is a disorder that has a neurobiological basis, which means there is a connection between the nervous system and how the brain works. In the United States, about one in 40 adults and one in 100 children have OCD. And according to the World Health Organization, OCD is one of the top-20 causes of illness-related disability worldwide for individuals between 15 and 44 years of age.³ Indeed, the National Institute of Mental Health noted that OCD was once ranked in the top-10 most disabling illnesses by lost income and decreased quality of life.⁴

Therefore, because OCD is such a complex, chronic disorder, it’s important to clear up misconceptions, reduce stigmatization and set the facts straight.

Separating Myth from Fact

Myth: OCD is not that big of a deal.

Fact: OCD is a big deal. OCD isn’t just an overreaction to stressors in life. It causes severe and often debilitating anxiety resulting in overwhelming obsessions that can limit individuals’ ability to function.⁵

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), considered the “gold standard” by most mental health professionals in the United States, the clinical definition of OCD is:⁶

A) Presence of obsessions, compulsions or both. Obsessions are defined by 1) recurrent and persistent thoughts, urges or impulses that are experienced, at some time during the disturbance, as intrusive and unwanted, and that in most individuals cause marked anxiety or distress and 2) the individual attempts to ignore or suppress such thoughts, urges or images, or to neutralize them with some other thought or action (i.e., by performing a compulsion).

Compulsions are defined by 1) repetitive behaviors or mental acts that the individual feels driven to perform in response to an obsession or according to rules that must be applied rigidly and 2) the behaviors or mental acts are aimed at preventing or reducing anxiety or distress, or preventing some dreaded event or situation; however, these behaviors or mental acts are not connected in a realistic way with what they are designed to neutralize or prevent, or are clearly excessive.

B) The obsessions or compulsions are time-consuming (e.g., take more than one hour per day) or cause clinically significant distress or impairment in social, occupational or other important areas of functioning.

C) The obsessive-compulsive symptoms are not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.

D) The disturbance is not better explained by the symptoms of another mental disorder (e.g., excessive worries, as in generalized anxiety disorder; preoccupation with appearance, as in body dysmorphic disorder; difficulty discarding or parting with possessions, as in hoarding disorder; hair pulling, as in trichotillomania [hair-pulling disorder]; skin picking, as in excoriation [skin-picking disorder]; stereotypes, as in stereotypic movement disorder; ritualized eating behavior, as in eating disorders; preoccupation with substances or gambling, as in substance-related and addictive disorders; preoccupation with having an illness, as in illness anxiety disorder; sexual urges or fantasies, as in paraphilic disorders; impulses, as in disruptive, impulse-control and conduct disorders; guilty ruminations, as in major depressive disorder; thought insertion or delusional preoccupations, as in schizophrenia spectrum and other psychotic disorders; or repetitive patterns of behavior, as in autism spectrum disorder).

According to Menije Boduryan-Turner, PsyD, a psychologist based in California, there are four categories of OCD behaviors (called compulsions):²

1. Acting compulsive such as checking, hand washing, locking, moving objects, staring, praying or seeking symmetry.
2. Seeking reassurance from loved ones, typing a search in Google or asking Siri.
3. Avoiding triggers such as social interaction, objects or walking around things.
4. Mental compulsions such as repeating words, counting, mental checking, rumination, visualization, thought suppression, neutralizing (replacing an unpleasant thought with a pleasant one) and mental reviewing (reviewing past actions).

Myth: Only women have OCD.

Fact: It may seem like more women than men would have an anxiety disorder such as OCD, but OCD equally affects men, women and children of all races, ethnicities and socioeconomic backgrounds. However, according to the most recent statistic, the prevalence of OCD in a 12-month period is higher in females (1.8 percent) than males (0.5 percent).²

Myth: OCD is just about cleanliness.

Fact: Obviously, the clinical definition of OCD proves that OCD is much more than obsessing over cleanliness. And, not all “neat freaks” have OCD.

Myth: Everyone is a little OCD at times.

Fact: Every person does not have some level of OCD. In fact, only just over 2 percent of the population has been diagnosed with OCD. Perpetuating the myth that everyone has some form of OCD makes it much more difficult for those who actually have it to receive the necessary assistance in treating it.⁷

Myth: OCD begins in childhood.

Fact: OCD can begin at any time from preschool to adulthood. Yet, according to the International OCD Foundation, there are generally two age ranges when OCD tends to first appear: 1) between age 8 and 12 years old and 2) between the late teen years and early adulthood.⁹ The average age of onset of OCD is 19.5 years old. Males make up the majority of very early-onset cases, with almost a quarter of males having onset before age 10. On the other hand, most females are diagnosed with OCD during adolescence (after age 10). In addition, people with early age of onset have more severe symptoms of OCD and higher rates of attention-deficit/hyperactivity disorder and bipolar disorder.²

The foundation also points out that in rare cases, symptoms of OCD “may develop seemingly ‘overnight’ with a rapid change in behavior and mood and sudden appearance of severe anxiety.” In this case, it is a subtype of pediatric OCD caused by an infection (e.g., strep throat) that confuses the child’s immune system into attacking the brain instead of the infection. This causes the child to begin having severe symptoms of OCD, often seemingly all at once, in contrast to the gradual onset seen in most cases of pediatric OCD. This type of OCD is called pediatric autoimmune neuropsychiatric disorder associated with streptococcus if it is a strep infection, or pediatric acute-onset neuropsychiatric syndrome if it is any other infection.⁸

Myth: OCD is rooted in childhood.

Fact: A common belief by many is that OCD is caused by growing up in dysfunctional homes and having poor self-esteem as a result. But, “what happens in childhood has very little to do with having OCD when you grow up,” explains Jeff Szymanski, PhD, executive director of the International OCD Foundation. However, he notes, OCD does run in families, and researchers believe genetics may play at least some part in its development, as well as experiences.⁹

Myth: It’s easy to tell if a person has OCD.

Fact: Actually, it can be difficult to tell if someone has OCD. This is because “people experiencing intrusive thoughts often don’t share with others what they are feeling or thinking and try to control it themselves, which can create anxiety and build up stress, guilt and even shame,” explains Cara Maksimow, LCSW, CPC. “Those negative feelings can reinforce the person’s need to keep the thoughts and behaviors a secret from those around them.”¹⁰

Myth: Stress causes OCD.

Fact: While stressful situations can make things worse for people with OCD, stress is not a cause of OCD. However, according to the Anxiety and Depression Association of America (ADAA), in persons who are genetically predisposed to OCD or who have a subclinical case of the disorder, “a stress trigger or trauma may precipitate symptoms, which also sometimes begin after a severe trauma such as the death of a loved one. Other stress triggers include the birth of a sibling, a marriage or divorce, a move to a new home or new community, a transition to a new school or new school year, or a natural disaster such as an earthquake or tornado.” In addition, ADAA says if OCD symptoms are already present, stress can worsen them, as can anxiety, fatigue, illness and even stress associated with holidays, vacations and other positive events.¹¹

Myth: Tests can confirm OCD.

Fact: Unfortunately, there are no blood or physical tests, nor are there brain scans to confirm a diagnosis of OCD. But, there are tests and techniques used by mental health professionals. “To diagnose OCD, trained therapists will ask questions to determine if you meet the criteria outlined in the DSM-5 for the disorder,” Keara Valentine, PsyD, a postdoctoral fellow at Stanford University School of Medicine in the OCD and Related Disorders Track, says.

Within DSM-5, many therapists will turn to SCID-5, which stands for Structured Clinical Interview for DSM-5. These therapists use structured diagnostic interviews or other inventories to assess symptoms of various mental health diagnoses to rule out other differential diagnoses, Dr. Valentine explains. However, in most OCD-suspected cases, trained OCD therapists will administer the Yale-Brown Obsessive Compulsive Scales (Y-BOCS) to assess individuals’ obsessions and compulsions, as well as the severity of symptoms.

Therapists want to determine how time-consuming the obsessions and compulsions are. According to Dr. Valentine, an hour per day might be a red flag, as well as if they’re roadblocks in any way to daily life (work, play, etc.). Further, they need to determine that these acts are not connected in any way to substance abuse, including alcohol and prescription medication, as well as rule out any other mental disorder that may be causing the obsessive behaviors such as generalized anxiety disorder.

It’s important to note that while a 2013 study published in Depression & Anxiety found that the risk of OCD was significantly increased when first‐degree family members had either OCD, tic disorders, affective disorders or anxiety disorders, just because a parent or sibling has the disorder doesn’t mean a child or sibling will also. And, researchers have not identified specific genes associated with OCD.¹²

Myth: OCD isn’t treatable.

Fact: OCD can be treated depending on how it is affecting individuals’ lives. The two main treatments are a type of cognitive behavioral therapy called exposure and response prevention (ERP) and medicine.

ERP, which has the strongest evidence supporting its use in the treatment of OCD, is typically performed by a licensed mental health professional (such as a psychologist, social worker or mental health counselor) in an outpatient setting. The exposure component of ERP refers to practicing confronting the thoughts, images, objects and situations that make individuals anxious and/or provoke their obsessions. The response prevention part of ERP refers to making a choice not to perform a compulsive behavior once the anxiety or obsessions have been “triggered.” All of this is done under the guidance of a therapist at the beginning — although individuals usually eventually learn to do their own ERP exercises to help manage symptoms. Over time, the treatment will “retrain the brain” to no longer see the object of the obsession as a threat.¹³

Only approximately seven out of 10 people with OCD will benefit from ERP. For the other three out of 10 people, medicine is needed. The main medicines prescribed are a type of antidepressant called serotonin reuptake inhibitors (SRIs), which can help improve OCD symptoms by increasing the levels of a chemical called serotonin in the brain. And, while not all antidepressants are effective for treating OCD, eight SRIs have been identified that are (see Serotonin Uptake Inhibitors for OCD). One of these, anafranil, has been around the longest and is also the best-studied for OCD. However, no studies have shown any significant differences in how all of these drugs work to treat OCD. So, it is suggested by the International OCD Foundation that the only way to tell which drug will be the most helpful with the least side effects is to try each drug for about three months. And, there are side effects with these medications, which most patients will experience.

There are also hundreds of case reports of other drugs that can be effective for treating OCD such as duloxetine (Cymbalta), which has been reported to help OCD patients who have not responded to these other medications.¹⁴

In addition to these, some newer treatments are being researched. As reported in the NIH Record, Carolyn Rodriguez, PhD, associate dean at Stanford University and professor of psychiatry and behavioral sciences, has been researching ketamine, which has previously been shown to relieve symptoms of depression within hours, and Dr. Rodriguez believed there was a mechanistic rationale to test the drug in OCD patients as well. Ketamine is a U.S. Food and Drug Administration-approved anesthetic that affects the brain’s glutamate system, which is involved in important brain functions such as learning and memory. Glutamate is the brain’s most common excitatory neurotransmitter. The drug blocks the NMDA receptor, which receives glutamate signals.

In a small pilot study, patients with OCD received a low dose of ketamine or saline via infusion. Those who received the ketamine reported a rapid decrease in OCD symptoms compared to those who received saline. One patient who received ketamine felt he had a vacation from his symptoms. Others reported they tried to have OCD thoughts but couldn’t.

In another study, Dr. Rodriguez partnered with a team to study ketamine’s effect on brain activity in people with OCD. To determine whether ketamine changed levels of glutamate in an area of the brain called the prefrontal cortex, researchers gave patients a dose of ketamine and imaged their brains using magnetic resonance spectroscopy. After an hour, they didn’t see any changes in glutamate, but they did see elevated levels of an inhibitory neurotransmitter called Gamma-aminobutyric acid, which blocks chemical messages in the brain and decreases the stimulation of nerve cells.

Dr. Rodriguez is also studying the potential of accelerated theta burst stimulation, a type of neuromodulation therapy, to treat OCD. She conducted an open-label study in seven patients who received five consecutive days of accelerated stimulation. Ten sessions were applied per day (18,000 pulses/day, hourly) or 90,000 total pulses. After five-days, patients experienced a robust and rapid response in five of the seven (71 percent), with at least a 50 percent reduction in OCD symptoms within seven to 14 days.¹⁵

Serotonin Uptake Inhibitors for OCD¹⁵

*High doses are often needed for these drugs to work in most people.

Artificial intelligence (AI) has also been making great strides in the field of depression treatment, and is showing promising results for OCD. OCD-focused AI studies are seeking to discover which particular protein (or proteins) are involved in the appearance of the condition’s adverse symptoms, and which molecular medication can regulate it. To date, a cell surface protein called 5-HTIA has been implicated: Normally, 5-HTIA is activated by the neurotransmitter serotonin, which has already been found to be related to the appearance of this condition. By calculating which molecular drug this protein will respond to, AI research is attempting to effectively decrease OCD severity, even in cases in which serotonin activation is below the normal rate.¹⁶

Myth: People with OCD can’t live normal lives.

Fact: It is completely possible for people to live their daily lives normally with OCD, especially with suitable treatment. ERP has had a fantastic success rate in reducing the symptoms of OCD by exposing patients to things that may activate their obsession and instructing them on how to avoid following through with a compulsion. And other forms of CBT have also been proven to be extremely helpful in overcoming certain struggles that those with OCD face.⁷

Indeed, there are many examples of prominent individuals with OCD who are living normal and successful lives, including Leonardo DiCaprio, Howie Mandel, Lena Dunham, Justin Timberlake and Camila Cabello.¹⁷

Myth: OCD remains the same forever.

Fact: OCD is a lifelong condition. However, the severity of OCD symptoms can and do fluctuate over a person’s lifetime, which means individuals may have times when their symptoms are worse and times when they ease up. This can be related to stress level, environment, the treatment methods being used and many other factors.¹⁸

Dispelling the Myths Now

OCD is a debilitating condition for millions of individuals in the U.S. While treatments have been shown to be successful for approximately two-thirds of those suffering from OCD, other treatments are needed to help the other one-third who don’t respond to mainstay treatments.

The International OCD Foundation is offering research grants to scientists investigating OCD and related disorders in 2023. In 2022, donations to the foundation provided more than $1.5 million in research funding.19 In addition, the Center for OCD, Anxiety and Related Disorders, with support from the Brooke Professorship and the McKnight Brain Institute at the University of Florida, is offering funding for pilot projects designed specifically for applicants proposing research that is related to OCD, anxiety or related disorders.²⁰

Even though there will never be a cure, individuals with OCD can still live a great life. In their book, Everyday Mindfulness for OCD, Jon Hershfield, MFT, and Shala Nicely, LPC, have a section titled “Chronic, Not Terminal.” And, according to Nicely, that’s “the best way to think about OCD.”²¹