Singer-songwriter Noah Kahan recently disclosed the diagnosis of OCD he received at the age of 28. Part of his delayed diagnosis stemmed from a misconception he had about OCD: that compulsive rituals must be physical and observable (ex. compulsive sanitizing). Noah is not alone. It takes an average of 14-17 years for someone to start to receive the correct diagnosis and effective treatment after they begin experiencing OCD symptoms. Additionally, misconceptions about OCD commonly contribute to the more than 80% of cases of OCD not being clinically diagnosed.
Below are five of the most common reasons that OCD gets misdiagnosed, along with information to dispel the myths.
1. Misrepresentations in media and marketing
OCD is commonly misrepresented in the media as a love of cleaning and organization or a quirky personality trait, which it is not. For example, Khloe Kardashian—who has 293 million followers on Instagram alone—created a #KhlOCD series on her app that showcased videos of organized and color-coded areas of her home. In one of the videos, Khloe says, “Areas like this for a homeowner are intimidating; a garage and a pantry, those get me really horny.”
While I cannot diagnose Khloe with OCD, and am not suggesting she does or does not have it, I can say that loving to organize is not OCD. OCD is an egodystonic condition, meaning the obsessions and compulsions are opposite to a person’s desires, values, beliefs, and self-concept. “Just right” obsessions do exist, where a person feels the urge to compulsively re-do something repeatedly (like move a pillow) until an internal sense of rightness is achieved, but the compulsions are distressing and time-consuming. The person with such obsessions does not want to be repeatedly moving items.
Contamination OCD, such as obsessions about germs and sanitization rituals, exists. However, someone struggling with this obsessional theme doesn’t enjoy scrubbing every item in their home with bleach repeatedly until their hands are raw, cracked, and bloody. They don’t love to clean. They feel compelled to perform sanitizing rituals to feed the beast of OCD, rituals that impair their functioning and torment the person.
OCD is not synonymous with being clean and tidy. When someone like Khloe Kardashian misrepresents OCD to millions of followers, it increases the likelihood of misdiagnosis.
It’s not just celebrities. Brands commonly make light of the disorder with campaigns like “Obsessive Christmas Disorder.” There is even a coffee brand called Obsessive Coffee Disorder. By doing so, they’re equating an obsession to something a person loves: “I’m so obsessed with coffee!” Psychologically speaking, though, obsessions are not enjoyable. They’re recurring, intrusive, and unwanted thoughts that torment people. Someone with OCD who is experiencing sexual obsessions about animals, for example, does not love having sex with animals. They’re tortured by unwanted intrusive thoughts and images of a sexual nature about animals.
2. Shame, stigma, and fear
Shame was what kept me suffering in silence for fifteen months before finally disclosing the content of my obsessions to my therapist. I had a sudden onset of sexual obsessions (about kids, animals, family members, and pretty much everyone around me), though I didn’t have a name for the terrorizing thoughts and images for over a year. I worried I had developed schizophrenia because of how vivid the images were, or had turned into a sexual predator overnight. Two months into suffering, I tried to work up the courage to tell my doctor about the thoughts that I was having, but I just couldn’t. I was worried they would misinterpret my unwanted thoughts as desires and intent to harm minors. Fears like this are what kept Noah from bringing up his taboo thoughts sooner. It’s a fear that keeps many people from receiving an accurate diagnosis.
The shame that you’re feeling is not rational. You are not a bad person for experiencing unwanted thoughts that are out of your control. They’re words in the mind. That’s all. They’re not good or bad. They merely are words.
If you’re afraid of what your therapist will think, please know that OCD specialists are trained to understand the differences between obsessions of OCD and actual danger or intent to harm. OCD specialists listen to people’s unwanted thoughts all day long and are not fazed by them. In fact, it’s pretty hard to shock them!
3. Generalized therapists don’t always know to assess for mental rituals
Like Noah, many people carry the misconception that OCD always involves physical compulsions such as hand-washing or tapping. The truth is that compulsions can occur entirely in a person’s mind, making them invisible to a clinician. It is imperative that clinicians understand this and assess for this. Unfortunately, graduate programs often do not teach clinicians in training about mental rituals and so this knowledge gap–along with the invisible nature of the symptoms–can lead to misdiagnosis.
Common mental compulsions include rumination, mental checking, hypothesizing, thought neutralization, mental review, prayer, counting, and more. It is entirely possible, and very common, to have OCD with no visible symptoms. Obsessions and compulsions can occur entirely in the mind.
4. Lack of knowledge about OCD’s many manifestations
Contamination OCD, such as germ obsessions and sanitizing rituals, is the most commonly publicized presentation of OCD. The reality is, though, that contamination obsessions make up a small sliver of OCD obsessional themes. Many people with OCD don’t worry about contamination.
OCD obsessions—repetitive, intrusive, and unwanted thoughts, images, sensations and urges— span a variety of content and often include taboo subjects, such as violence, sex, and blasphemy.
Obsessional fears vary widely:
- What if I am attracted to animals?
- What if I snap and stab someone?
- What if I am a pedophile?
- What if I offended God on purpose?
- What if I don’t love my partner “enough”?
- What if I never stop thinking about my blinking?
A lack of knowledge about the various manifestations of OCD can prevent someone with OCD from understanding that their scary thoughts are a symptom of OCD. When I started experiencing relentless intrusive sexual thoughts out of nowhere, not once did I fathom that they could be OCD symptoms. I had never heard of OCD manifesting in that way.
If someone comes into a therapist’s office and says, I’m having unwanted thoughts about stabbing my spouse, so I avoid using knives, this could be missed by a therapist who doesn’t understand OCD. However, a therapist who is specialty trained in OCD would know that these thoughts don’t represent your character, intent, or desire.
5. OCD being misdiagnosed as generalized anxiety disorder (GAD)
OCD is not just anxiety. The symptoms of OCD are not the same as GAD and should not be treated as such. With GAD, people tend to experience excessive worry about real-life concerns: finances, relationship struggles, academics, etc. People with OCD experience anxiety, too, but they also experience pathological, irrational doubt about topics and issues that are not rooted in reality (i.e. what if the door is not locked even though the person is staring at a locked door, what if i’m a pedophile even though the person isn’t attracted to children, or what if I am not gay and I’m lying to everyone when the person really is gay). GAD is characterized by excessive worry whereas OCD, known as the doubting disorder, is often characterized by obsessional doubt (which is different from reasonable doubt).
OCD is nicknamed the doubting disorder for a reason. People with OCD tend to doubt what they know. They stare at a locked door while their OCD says, “what if it’s not actually locked?” Then, they compulsively shake the door and twist it and unlock it just to lock it again. They know they’re not attracted to children, and never have been, but start to doubt that knowing because of relentless sexual intrusions. “What if I’m a pedophile?” becomes a thought they cannot escape.
Though effective OCD treatment involves managing distress in a new way, it is not merely about helping a person cope with anxiety. It’s about helping them understand why they are doubting what doesn’t need to be doubted in the first place. It’s about helping them face triggers head-on without performing the compulsive rituals that keep OCD alive and growing.
If you’re struggling with OCD symptoms, NOCD can help. Our licensed therapists deeply understand OCD and are specialty-trained in treating OCD with ERP. They’ll work with you to create a treatment plan personalized to your unique needs and help you regain your life from OCD. You can book a free 15-minute call with our team to learn more about getting started with OCD treatment.
