“Every minute of every day I had terrifying thoughts of harming myself that I could not understand to save my life.”
Prior to her diagnosis less than a year ago, Orlando resident Kate Feder, recalls spending months afraid of leaving her apartment. “All I wanted to do was sleep because that was the only time that the thoughts weren’t suffocating me,” the 23-year-old tells HealthyWay.
Mental health, like everything else, exists on a spectrum. But far from the rosy-colored depictions we see in popular culture, symptoms of obsessive-compulsive disorder (OCD) are intrusive and unwanted, often inhibiting a person’s day-to-day functioning. Imagine feeling overwhelming uncertainty all day, every day—a constant what if? humming in your mind.
According to the National Institute of Health, 1.2 percent of Americans over the age of 18 have been diagnosed with OCD in the past year, yet there is still a lot that is unknown about the disorder. We reached out to experts and people living with OCD to dispel common myths and misconceptions. Here is what you should know.
What is OCD?
Broadly defined, OCD is a chronic, long-lasting disorder characterized by uncontrollable, reoccurring thoughts (obsessions) like an extreme fear of germs, having things in perfect order, unwanted thoughts involving sex, religion, or harm.
“Often, people come in with anxiety, depression, or eating disorders, but don’t realize that OCD is either underlying or comorbid with another disorder,” says Kate Dansie, master of social work, a clinical therapist from Maryland who specializes in OCD.
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It’s often characterized by behaviors (compulsions) that the person feels the urge to endlessly repeat. This can look like excessive cleaning or hand washing or repeatedly checking on things like whether a door is locked or the oven still on.
While many of us are prone to double checking things, those with OCD will spend an inordinate amount of time performing these behaviors or rituals. “In order to be diagnostically classified as having OCD, the obsessions and compulsions have to be time-consuming (greater than one hour a day) or cause significant distress or impairment,” explains psychotherapist Jennifer Welbel, who treats patients in her Illinois center for anxiety.
“Many people think of the television character Monk or Jack Nicholson’s character in as Good As It Gets,” says Boston freelance writer Laura Kiesel, who was diagnosed at age 14 with Pure-O, a variant of the disorder where there are no obvious outward compulsions—only distressing mental images.
She explains that OCD is often portrayed in the media as a person having repetitive behaviors like hand-washing or counting steps, but these don’t convey her own experience: intrusive, disturbing thoughts that made her put off therapy for fear of being committed.
Similarly, Feder says she created compulsions out of fear to help ease the pain of her thoughts. “These compulsions ended up becoming an issue that I couldn’t stop acting out, and I knew I needed to get help.”
Worries are not the same as obsessions.
We all have a habit of conflating small worries with major concerns, but according to Feder, the biggest myth about OCD is that it’s a personality quirk that makes you want to organize or color-code things around your home. She wishes people understood that the disorder isn’t some “cute” term to throw around for attention.
“That is the farthest thing from the truth and continues to perpetuate a stigma that is completely untrue and hurtful to those who actually suffer from this crippling disorder.”
To qualify as having obsessions in OCD, they must be recurrent and persistent thoughts, urges, or impulses that cause distress and are experienced as intrusive and unwanted. “I often have clients tell me that they are ‘obsessing’ over something and therefore, they must have OCD,” says Welbel.
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If a person has a fear of contamination but is able to wash their hands a few times and then move on with their day, then they would qualify as having tendencies but not have a formal diagnosis. Likewise, an individual that has a fixation on something like video games does not necessarily have the disorder.
Anna Prudovski, an Ontario psychologist and clinical director of Turning Point Psychological Services, defines OCD as a sliding scale or a continuum with hardly noticeable symptoms on the one end and extremely severe presentation on the other end.
OCD can be mild in form, where the compulsions do not greatly impact a person’s life. The other side of the scale is the opposite.
“At its worst, [the disorder] is debilitating,” says Dansie, “with people spending hours upon hours on rituals in an attempt to neutralize the perceived threat.”
Overlooked Symptoms of OCD
According to experts, these are six of the most commonly overlooked signs of obsessive-compulsive disorder.
Intrusive Thoughts or Images
“Many OCD sufferers have no visible rituals and it is impossible for others to identify the OCD,” says Prudovski. But this type of OCD is no less severe. “The person with Pure-O OCD [as Kiesel was diagnosed with] may be preoccupied with obsessions and mental compulsions every waking hour, which leads to tremendous suffering.”
Difficulty Concentrating
It may look similar to ADHD, learning disabilities, or even just lack of interest. But in fact, this symptom is related to the person giving constant internal attention to their obsessions and urges. And while OCD and ADHD seem related on the surface, there can be enormous consequences if mistaken for each other, as treatment differs for each.
Reassurance-Seeking
This is rarely associated with OCD, but constant reassurance-seeking, where no amount is enough, is very often a sign of OCD. In such cases, seeking reassurance is a compulsion. For example, a person obsessed with a burglar breaking into their home will continually check the lock on the door in an attempt to reassure themselves.
Preoccupation With Certain Numbers
Some people with OCD have numerous superstitions and so-called magical thinking. They are preoccupied with doing things a certain number of times or avoiding specific numbers. For example, Prudovski notes that a person may avoid number 6, and also numbers 5 and 7 as they are next to number 6, and also all the numbers that can be divided by 6, etc. This compulsion may not be visible to others, but the sufferer is preoccupied with how many times they pump the shampoo bottle, what number the volume of the radio is, or what temperature they are “allowed” to put their oven on.
Fear and Avoidance
A symptom especially common in people who have Harm OCD, who are afraid to harm others. They may go to great lengths to avoid being next to children, relatives, persons of a specific gender, or specific places. As Charles Elliott, PhD, a clinical psychologist and a founding fellow in the Academy of Cognitive Therapy, explained in an interview with PsychCentral, “It makes your world smaller and fosters your fears. The more you avoid, the worse things get.”
Being Chronically Late
According to Laura Dabney, MD, a psychiatrist from Virginia Beach, chronic tardiness is due to needing to perform rituals or behaviors before being able to leave the house or wherever they find themselves in that moment. As highlighted in this HealthBoards thread, people with OCD can also become anxious about arriving somewhere at the wrong time or forgetting something they needed.
OCD can easily be misdiagnosed.
In some cases, the symptoms may not be impairing enough and can easily be misdiagnosed. In fact, one 2015 study found that half of obsessive-compulsive disorder cases were misdiagnosed by primary care physicians.
Unfortunately, therapists who aren’t familiar with OCD may diagnose someone with depression or even send someone to the hospital, despite that person having no intent to hurt themselves. As Dansie notes, “This is misdiagnosis at its worst!”
According to Jamie McNally, a licensed professional counselor and owner of Sycamore Counseling Services in Michigan, many practitioners are also not particularly aware of the nuances of the disorder, confusing Obsessive-Compulsive Personality Disorder (OCPD) with OCD.
Key differences between OCD and OCPD
The obsessions that manifest in OCD aren’t always rational and can even seem bizarre. “Typically, people with OCD want to be rid of these thoughts and actions,” says McNally.
On the other hand, an individual with OCPD may also be highly focused on order, but this presents as a rigidity or stubbornness to have things a certain way because of a strict moral code, a belief that theirs is the “only right way,” or as a result of high levels of perfectionism.
McNally is adamant that more attention should be given to these different diagnoses, as misdiagnosis can easily occur, and this has critical implications for treatment.
How is OCD treated?
Welbel recommends seeking a therapist trained in Exposure and Response Prevention (ERP), as the most evidence-based effective method for dealing with OCD symptoms. “It involves gradually confronting the [person’s] feared situations, impulses, urges, or thoughts.”
By doing so, she says the goal is that they learn the following:
- Our feared situations, outcomes, or triggers are not as dangerous and scary as we initially thought.
- Our anxious feelings and body sensations are not as bad as we make them out to be.
- We are capable of tolerating the anxiety, risk, and uncertainty that we have avoided for so long.
- Our feared outcomes usually don’t occur; and if they do, we can manage it better than we thought.
“[The therapy] involves facing your obsessions—fears—head on and not acting out compulsions,” says Feder, who has tried the treatment for the past several months and found it to be helpful. “[ERP] is extremely scary for those with OCD, but it’s the best form of therapy possible.”
It’s important to realize that the obsessions and compulsions are serving a purpose, explains Dabney. “They are there for an unconscious reason.” For many, the reason is to cover an unwanted or unacceptable feeling, she notes. “The brain can not focus on facts and feelings at the same time.” In fact, past studies have shown that being highly sensitive to guilt plays a significant role in checking-related OCD symptoms.
“Treatment would then consist of helping the patient normalize whatever feeling they are avoiding.” Dabney gives the example of a child who feels guilty for being angry at a parent they love and consequently starts using obsessions and compulsions to distract from their anger. “A therapist would help [the child] to realize that anger at those we love is normal.”
Aside from her therapy sessions, Feder says she also takes an SSRI (Lexapro) at a high dosage to help lower her anxiety—a main contributor to OCD. According to the International OCD Foundation, those who benefit from medication usually see their OCD symptoms reduced by 40 to 60 percent.
That said, it’s not the definitive answer for everyone. “I was on medication for only a short while—about six months—and I didn’t react well to it,” says Kiesel, who was initially diagnosed in her teens. “While it did help some with decreasing the frequency of my obsessive thoughts and relieve some of the companion anxiety, the side effects ultimately outweighed the benefits.”
Breaking Away From Stigma
“What ultimately helped me [as a teen], as strange as it sounds, was joining and becoming very active in drama club in high school,” notes Kiesel. “Having something to distract and redirect my busy mind … as well as a creative and expressive outlet, was crucial to my recovery.”
While she is no longer in theater, Kiesel says her writing now serves a similar purpose and has since written about her experience. “I also think not feeling guilty or scared of these thoughts has allowed them to not have the control they had over my life.”
Overall, she’s adamant that greater awareness and education on OCD would help break the stigma surrounding the disorder.
Feder agrees: “People who are actually diagnosed with OCD do not go around bragging about it or talking about it in a funny way,” she says. “It’s a far more serious issue that deserves to be spoken about respectfully.”