They include jokes (“Hey, we could really use you in my family”) and minimization (“We all have some OCD, right?”) that unwittingly trivialize the suffering of my patients.
These patients include: the mother tortured by intrusive thoughts about hurting her children; the grown son who calls his elderly mother weekly but has not visited her in years because he has intrusive sexual and violent images about her; the lawyer whose “just right” obsessions made her unable to meet deadlines and the teacher with such severe contamination fears that he washes with bleach each night.
People with OCD often avoid situations that trigger their obsessions or compulsions.
In the last few decades, we’ve learned a lot about OCD. It’s time to dispense with some common myths. (Some of the details of examples below have been changed to protect patients’ privacy.) Here are five big ones:
Myth No. 1: OCD is rare.
Two of every 100 Americans will suffer from OCD in their lifetime. This means that OCD is twice as common as schizophrenia. Unfortunately, OCD usually starts early (half of all cases start by age 18; a quarter begin before 14), and its course is often chronic. Thus, OCD is not rare.
Moreover, once OCD develops, one can wrestle with it for a lifetime, as many of my patients have.
Myth No. 2: We all have OCD.
Yes, we all have occasional intrusive thoughts (e.g., did I just say the wrong thing?). Many endorse some type of ritual or repetitive behavior (such as double-checking to make sure the door is locked). Most of us also have habits (like taking the same route to work). Some of us are very rigid in our views and perfectionistic. This is not OCD.
OCD is a specific illness characterized by obsessions (repetitive thoughts, images or urges) that generates significant distress and by compulsions (repetitive thoughts or acts) that the person feels driven to perform. To be OCD, these symptoms must cause impairment and be highly distressing and time-consuming (taking up more than an hour a day). Many OCD patients obsess and ritualize on and off all day.
Although most people with OCD have both obsessions and compulsions, the specific content can vary between individuals. The result is that different patients can have very different symptoms.
Some common themes include: intrusive thoughts about harm with checking rituals (like the mother); taboo (usually sexual, religious or violent) thoughts (like the son); concerns about symmetry and exactness with ordering and arranging behaviors (like the lawyer) and obsessions about contamination with washing rituals (like the teacher). Note: Hoarding behaviors can also occur as part of the compulsions of OCD, but if the primary problem is difficulty discarding, this is now diagnosed as Hoarding Disorder.
Yet the OCD devil is in the details.
For example, I once worked with a man whose contamination concerns were focused not on an illness but on the state of California; as a result, he forbade anything with the word California in his house and he once forced his entire family to move after receiving mail from a California address.
Importantly, not all repetitive thoughts or behaviors are OCD. For example, people with depression can ruminate, those with generalized anxiety disorder can incessantly worry and people with trichotillomania can repeatedly pull their hair. The point is that we do not all have OCD. Some people do, and they suffer.
Myth No. 3: OCD is helpful.
The data show that OCD impairs functioning across many different domains, including worklife, social relationships and family. OCD is impairing because of its relatively early onset, its typically chronic course and the likelihood that most people with OCD will have moderate to severe symptoms.
When beset by hours of obsessions and compulsions each day, it is hard to perform at your best at work, socializing is difficult and family life is turned upside-down.
People with OCD also often avoid situations that trigger their obsessions or compulsions. For example, the mother I mentioned forbade her children to join her in the kitchen (fearful she would harm them with the cutting knives), the teacher never invited anyone to his home and the lawyer eventually lost her job.
Imagine having to move your entire family if you got mail from California.
The bottom line is that OCD interferes with life and can cause people to miss important milestones, such as graduating from high school or college, leaving home, marrying and having children and advancing in your worklife. The disability can accrue over time and be devastating.
Myth No. 4: OCD is “made up.”
The brain underlies our behavior, including abnormal behaviors like obsessions and compulsions. Dysfunction in specific brain circuits has been linked to obsessions and compulsions. The data come from: imaging studies comparing the brains of people with OCD to those without OCD; case studies of new-onset OCD in people following acute brain lesions and studies that disrupted specific brain circuits in animals and produced repetitive behaviors that could be “treated” using the same medications that work in people with OCD.
Of course, how the brain develops this dysfunction is a different question. Like most medical illnesses, OCD is likely to have multiple causes that play out across development and range from genes that increase risk for the illness to environmental triggers.
Myth No. 5: OCD is untreatable.
There are two effective treatments for OCD: medications called serotonin reuptake inhibitors (like Prozac, Zoloft and their siblings) and a specific form of cognitive-behavioral therapy (CBT) that includes exposure and ritual prevention. Either alone or in combination, these treatments help up to half of patients keep their symptoms to a minimum within eight to 12 weeks, even in adults who have been ill for decades.
Very intensive CBT protocols — daily sessions or residential programs — can achieve results even more quickly. This offers incredible hope.