Everybody has an occasional upsetting or shameful thought. For some people, the thoughts feel uncontrollable. It doesn’t take long for someone to worry they’re going “crazy” or wonder if they’re just a bad person. While this struggle may be invisible to others and different from what you see on TV or in the movies, it could be OCD.
People with this type of OCD would never dream of acting on their upsetting thoughts, but incorrectly assume their intrusive thoughts mean they might. This shame and fear often leads them to keep their thoughts a secret instead of asking for help.
Alegra Kastens, a therapist and OCD specialist, says this fear is one big reason why OCD is under-diagnosed and misdiagnosed, according to research. As Emory University describes it, “OCD is debilitating, but manageable” and more treatable than ever, making these midiagnoses sad and frustrating for experts like Kastens.
Before you protest or say that thoughts alone can’t be OCD, please know that repeatedly washing already-clean hands is not the only way to have OCD. In reality, Alegra Kastens says, outwardly visible behaviors only represent a small percentage of OCD patients. She told Andrea Miller all about it on a fascinating episode of the Getting Open podcast, and here are a few of the details that stood out to me most.
People who have these 4 thoughts may actually have OCD, according to an OCD specialist:
- “Seeing” intrusive images
- “Hearing” intrusive thoughts
- Heretical thoughts (more common in religious people)
- Scary thoughts that won’t go away
The first big myth to dispel is that, despite what Khloe Kardashian may say, having a super organized kitchen to an extreme degree is not OCD. That may be OCPD, which is more of a personality trait, but it is not typical OCD as it doesn’t go against a person’s values or common sense. In fact, Kardashian is outwardly proud of her extreme tidiness!
“OCD is commonly spoken of as a bit synonymous with perfectionism, and it’s definitely not,” Kastens says. “Those are two separate things because OCD is not a personality trait, and it’s not a personality disorder. It’s a disorder of doubt where there are no outward compulsions. So you’re not doing any behaviors that are observable. It’s just rumination and mental rituals.”
Kastens herself has suffered from OCD, with horrible intrusive thoughts that disrupted her life. They went against her values and scared her every single day.
Because of the shame she felt for having these thoughts, she didn’t think she could get help. But seeking help made her feel less alone, and it helped reduce the intrusive thoughts. After a few years, and finding an OCD specialist, she truly started feeling better.
OCD is about intrusive thoughts and behaviors
Karsten described her experience of denial and realization, “I’m literally scrolling through these articles saying this is how OCD can manifest, but I really thought OCD was about compulsive sanitizing and doing things in the right way. So even when I found that online, I thought this is not me, and there’s no way that I’m going to go to an OCD center for treatment.”
Because she didn’t have any physical compulsions, she also didn’t understand how the compulsions of OCD can be mental. The situation is exacerbated because nobody can see the mental compulsions, and that’s also a really devastating part of OCD for people. It’s not always visible.
What if these bad thoughts are my real personality?
PeopleImages | Shutterstock
This is a question many people with OCD have, one that often haunts them. Karstens understands, as she had thousands of unwanted and disturbing thoughts a day, something she’d never experienced before the onset of her OCD as a young adult.
“I never had thoughts like that before. It was like my brain broke. I couldn’t understand why I would be having these thoughts and images,” she told Miller. “I thought, ‘maybe I’m schizophrenic’. Like if I’m seeing these intrusive images in my mind, if I’m hearing this voice that doesn’t feel like my own, is this schizophrenia, or did I just snap? It is such a destabilizing experience, and it attacks everything that you know about yourself.”
Obsessions are often the opposite of your values or personality
After about three years of treatment, she feels like she doesn’t even have OCD anymore. But the disturbing thoughts and a lack of understanding about their origins can lead many people to turn to substance use to numb out these thoughts. They can’t tell anyone about them because they think it means they’re criminals, or worse.
Karsnet brought up America’s OCD Care Crisis, which has shown that “more than 80% of patients with OCD do not receive the recommended therapy for OCD. OCD affects millions, but rates of diagnosis and treatment are very low. So there’s a lifetime prevalence rate of approximately 3%. OCD will afflict up to 10 million Americans at some point in their lives. But despite its prevalence, it is massively underdiagnosed.”
Due to a lack of understanding and misdiagnosis, many people get to the point of suicide because they are so afraid of what these thoughts mean about themselves and their personality. In reality, OCD and mental compulsions are treatable and can actually go away or become almost undetectable.
What therapists and counselors need to know about OCD:
Understanding the reality of OCD, realizing it is mostly thought-based compulsive thinking, is important for diagnosis, support and effective treatment. Karsten wants clinicians to understand that misdiagnosis of OCD patients can actually make OCD worse
For “people with OCD who have obsessions and non-observable compulsions, it’s really important that any clinician, whether a therapist or a psychiatrist, knows that mental compulsions exist. That is one of the reasons people often get misdiagnosed.”
OCD isn’t always about hand-washing, being super organized, or germophobia. Understanding this can save lives. If we’ve made a mistake and mischaracterized it in the past, we can adjust and help raise awareness and be part of the solution! There is hope!
What we need is more inclusive and affirming care for OCD patients, no matter how it manifests for them. With mental-health spaces that better support all people who feel invisible, more people can get treatment and recover, and this can save countless lives, like that of Alegra Kastens herself.
Will Curtis is YourTango’s expert editor. Will has over 14 years of experience as an editor covering relationships, spirituality, and human interest topics.
Related Stories From YourTango: