“America’s Got Talent” judge Howie Mandel has been open for many years about his struggles with anxiety and obsessive-compulsive disorder (OCD). However, in a recent interview with People magazine, the comedian discussed how painful that struggle could be: “If I’m not laughing, then I’m crying. And I still haven’t been that open about how dark and ugly it really gets.”

Mandel, 65, has suffered from OCD since childhood (although he wasn’t officially diagnosed until he was an adult). In an interview with Everyday Health in 2010, Mandel said: “I was always incredibly obsessed with germs and cleaning and taking shower after shower after shower. Even when I was very young, I wouldn’t tie my shoelaces because they had touched the ground. I had continuous repetitive thoughts that I couldn’t get past. As a child, my mind was a lot busier than I was.”

Although Mandel said he is “living in a nightmare,” he explained that he tries to anchor himself: “I have a beautiful family and I love what I do. But at the same time, I can fall into a dark depression I can’t get out of.” He has been married to his wife, Terry, since 1980 and has a son and two daughters. His eldest daughter, Jackie, 36, also suffers from anxiety and OCD.

The pandemic was an especially difficult time for Mandel. He told People: “There isn’t a waking moment of my life when ‘we could die’ doesn’t come into my psyche,” he said. “But the solace I would get would be the fact that everybody around me was okay. It’s good to latch onto okay. But [during the pandemic] the whole world was not okay. And it was absolute hell.”

Mandel said he is speaking up again at this time because “my life’s mission is to remove the stigma [of mental illness]. I’m broken. But this is my reality. I know there’s going to be darkness again — and I cherish every moment of light.”

OCD

OCD is a common, chronic, and long-lasting disorder in which a person has uncontrollable, reoccurring thoughts (obsessions) and/or behaviors (compulsions) that he or she feels the urge to repeat over and over.

Approximately 2.3% of the U.S. population has OCD, which is about one in 40 adults and one in 100 children. The average age of onset is 19.5 years. About 50% of those with OCD have onset of symptoms in childhood and adolescence.

Males present earlier, but in adulthood, more females are affected. In families with a history of OCD, there’s a 25% chance that another immediate family member will develop symptoms.

Half of adults with OCD (50.6%) have serious impairment, 34.8% have moderate impairment, and only 15% are mildly impaired.

The majority (90%) of adults who have OCD at some point in their lives also have at least one other mental disorder. Conditions that are often comorbid with OCD include:

• Anxiety disorders, including panic disorder, phobias, and post-traumatic stress disorder (75.8%)
• Mood disorders, including major depressive disorder and bipolar disorder (63.3%)
• Impulse-control disorders, including attention deficit-hyperactivity disorder (55.9%)
• Substance use disorders (38.6%)

Signs and Symptoms

People with OCD may have symptoms of obsessions, compulsions, or both. These symptoms can interfere with all aspects of life, such as work, school, and personal relationships.

Obsessions are repeated thoughts, urges, or mental images that cause anxiety. Common symptoms include:

• Fear of germs or contamination
• Unwanted forbidden or taboo thoughts involving sex, religion, or harm
• Aggressive thoughts towards others or self
• Having things symmetrical or in a perfect order

Compulsions are repetitive behaviors that a person with OCD feels the urge to do in response to an obsessive thought. Common compulsions include:

• Excessive cleaning and/or handwashing
• Ordering and arranging things in a particular, precise way
• Repeatedly checking on things, such as to see if a door is locked or that the oven is off
• Compulsive counting

Not all rituals or habits are compulsions. Everyone double checks things sometimes. But a person with OCD generally:

• Can’t control his or her thoughts or behaviors, even when those thoughts or behaviors are recognized as excessive
• Spends at least 1 hour a day on these thoughts or behaviors
• Doesn’t get pleasure when performing the behaviors or rituals, but may feel brief relief from the anxiety the thoughts cause
• Experiences significant problems in their daily life due to these thoughts or behaviors

Etiology

The exact cause of OCD is still unknown, but it is believed to be multifactorial. Twin and family studies have shown that people with first-degree relatives (such as a parent, sibling, or child) who have OCD are at a higher risk for developing OCD themselves. The risk is higher if the first-degree relative developed OCD as a child or teen.

Imaging studies (functional MRIs, diffusion tensor imaging, and single-photon emission computerized tomography) have shown differences in the cortico-striatal-thalamo-cortical (CSTC) circuits of the brain in patients with OCD. These differences are most noticeable in the orbitofrontal cortex, the caudate, anterior cingulate cortex, and thalamus.

Environmental factors may also play a part in the development of OCD. Those implicated (but for which causal associations have not, as of yet, been established) include:

• Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, a group A streptococcal infection
• Premenstrual and postpartum periods, which can be associated with new onset or exacerbation of OCD
• Exposure to traumatic events
• Neurologic lesions, such as stroke or traumatic brain injury that affect CSTC circuits

Treatment

The mainstays of OCD treatment are serotonin reuptake inhibitors (SRIs) and cognitive behavioral therapy (CBT). Although most patients with OCD respond to treatment, some patients continue to experience symptoms.

It is important to consider any other mental disorders a patient may have when making decisions about treatment.

Medication

Two primary neurotransmitters are thought to contribute to OCD: serotonin and glutamate. The improvement of OCD symptoms with the use of serotonergic antidepressants led to the hypothesis that changes in serotonin play an important role in OCD. More recent studies support the idea that glutamate also plays a significant role.

SRIs, which include selective serotonin reuptake inhibitors (SSRIs), are used to help reduce OCD symptoms. SRIs often require higher daily doses in the treatment of OCD compared with depression and may take 8 to 12 weeks to start working.

If symptoms do not improve with these types of medications, research has shown that some patients may respond well to an antipsychotic medication, such as aripiprazole or haloperidol, as an adjunct.

Psychotherapy

Psychotherapy can be an effective treatment for adults and children with OCD. Research has shown that certain types of psychotherapy, including CBT and other related therapies (e.g., habit reversal training), can be as effective as medication for many individuals. Research also has shown that a type of CBT called exposure and response prevention — spending time in the very situation that triggers compulsions (e.g., touching dirty objects) but then being prevented from undertaking the usual resulting compulsion (e.g., handwashing) — is effective in reducing compulsive behaviors in patients with OCD, even in those who did not respond well to SRIs.

Other treatment options

In 2018, the FDA approved transcranial magnetic stimulation (TMS) as an adjunct in the treatment of OCD in adults. TMS is a procedure that uses magnetic fields to stimulate nerve cells in the brain. The FDA permitted the marketing of TMS as a treatment for major depression in 2008 and expanded the use to include pain associated with certain migraine headaches in 2013.

Clinical trials of new methods for treating OCD can be found at the National Institute of Mental Health clinical trials webpage.

Michele R. Berman, MD, is a pediatrician-turned-medical journalist. She trained at Johns Hopkins, Washington University in St. Louis, and St. Louis Children’s Hospital. Her mission is both journalistic and educational: to report on common diseases affecting uncommon people and summarize the evidence-based medicine behind the headlines.