This is what it’s really like to have OCD, according to 4 people living with it

What do you think of when you hear the term “OCD”?

In pop culture, people with obsessive-compulsive disorder are often portrayed as meticulous to an extreme degree. They’re highly organized, perfectionistic, or germophobic — like Jack Nicholson’s character in the film As Good As It Gets, who tosses out bars of soap after using them once.

Depictions like that aren’t inaccurate, but they’re not the whole story.

Research shows that 1 in 40 American adults have OCD or will develop it at some point in their lives, according to the International OCD Foundation. Although the term “OCD” is often used casually, the disorder must be diagnosed by a medical professional.

We wanted to take a closer look at how people with OCD cope with it every day as OCD Awareness Month wraps up.

I live with OCD, and it impacts just about every aspect of my life. Growing up, I had to say a prayer before I ate anything, because I thought I’d vomit if I didn’t. Later in life, I struggled with flying, because I feared that I might vomit on the plane, or that someone might vomit near me.

The fear of vomiting is called emetophobia, and it’s a common symptom of OCD — though it’s not talked about as often.

This may sound like anxiety. So, what makes OCD distinct?

People with OCD can experience very specific intrusive thoughts known as obsessions, and then engage in compulsions, which are ritualized behaviors to address them, according to the International OCD Foundation.

Anxiety can be the underlying emotion of OCD — but unlike generalized anxiety disorder, the underlying emotion could also be a sense of disgust, wrongness or incompleteness, according to Dr. Christopher Pittenger, the director of the Yale School of Medicine OCD Research Clinic.

“All of us get thoughts like that and all of us do things to control our anxiety,” Dr. Pittenger said. “OCD is when those get to such a point that they start to take over and really get in the way of people's ability to live their lives.”

My fear of vomiting kept me from boarding a plane for five years. I missed seeing my cousins’ kids grow up because they lived across the country. And I missed out on work trips that required air travel.

I spoke with people about how OCD impacts their lives — from relationships, to jobs, to their overall sense of self.

Living with Relationship OCD

“I was constantly thinking like, we need to break up because I'm not good enough, or maybe there's better matches for us somewhere else. I would just spiral about that every day and I would cry about it a lot,” said Sarah Jaley, 23, who lives in Washington D.C.

For Michael, 27, in Greenville, S.C., his obsessions sound like, “What if I get cheated on? What if the person I'm dating is not a good fit? Or like, what if we don't end up together? What if I don't actually love them? Or what if they don't love me?”

NPR agreed to only use his first name because he’s a teacher and wants to protect his medical privacy.

Both Jaley and Michael say they’re plagued by unhelpful thoughts about their relationships — even when things are going well — because they have Relationship OCD. It’s a form of Pure Obsessional OCD — often called Pure O in online support communities.

Relationship OCD is diagnosed less often than it actually occurs — because those who have it, and clinicians, are often unaware it exists. It is not a distinct condition listed in the Diagnostic and Statistical Manual of Mental Disorders, but it is a way that OCD can manifest that clinicians treating the disorder have identified.

Michael was diagnosed in 2021 — and since then, he’s had a lot of success doing exposure and response prevention therapy, or ERP. That involves confronting the things that provoke his obsessions, then making a choice not to do a compulsion, according to the International OCD Foundation.

It took him a while to figure out that his compulsions were things like comparing his current relationship to past relationships, or trying to figure out a problem in the relationship that was causing the intrusive thoughts — even if there wasn’t one.

He’s been in a relationship for around eight months now — and he went into it knowing he had Relationship OCD.

“One of the important things that I wanted her to know early on is like, ‘Hey, sometimes, like, my brain may obsess about our relationship, but it has nothing to do with you,’” Michael told his girlfriend, “And actually, me telling you about what I'm obsessing about is a compulsion.”

Living with “Pure O” OCD

Pure O can be hard to diagnose because unlike OCD that manifests physically — like constant handwashing, or checking locks on the door — the compulsions are often invisible, according to OCD treatment platform NOCD.

Boston therapist Elizabeth Vossen, 26, said she has Pure O and described it as “normal thought patterns in overdrive.”

She was diagnosed with anxiety before she was told she had OCD. But that didn’t make sense to her.

“Things don't have to be just right. I'm not neat, I don't need to wash my hands,” Vossen said.

Initially, her obsessions and compulsions seemed useful.

“I'm so thoughtful,” Vossen said. “Like, I think so intensely about other people and their feelings. I get to feel really confident in the choices that I make because I just think it's so hard about it.”

But, “thinking so hard about it” is a compulsion for Vossen. When she’s obsessing about a past interaction, she has to think deeply about it until she feels better — even if there’s nothing new to glean.

OCD also manifests in her work as a therapist. Her obsessions sound like, “Did I say the right thing? Did I do the right thing? Was I empathetic enough? Did I offer the right amount of help?,” Vossen said.

“And there's always a part of me that's like, well, isn't that a good thing, don’t I wanna be thinking really hard to be a good therapist?,” she added.

Vossen doesn’t treat clients who have OCD anymore. After a client shared about an obsession they were dealing with, she started experiencing it too.

“I asked about the character of their intrusive thoughts and they were like, ‘Oh, I imagine all of my teeth snapping. And I imagine like taking nail clippers and severing my teeth,’” Vossen said. “And now every single time I trim my nails or if I'm brushing my teeth, I am thinking about my teeth breaking and I'll even, like, clench my jaw to feel like they're all still there.

Once she figured out that the problems she was having were OCD, and not anxiety, she started ERP, and said it’s been “life changing.”

“It’s OK to have obsessions.” Vossen said, “And they become diminished when I can accept them and not engage with the anxiety that surrounds them.”

Living with Sexual Orientation OCD

Shaun Flores, 30, lives in London and he advocates for people with the disorder. Flores started sharing his experiences because he didn’t see many Black people talking openly about OCD. He said his OCD has taken many different forms, including one that's very difficult to talk about: Sexual Orientation OCD.

“I became obsessed with this idea that suddenly overnight I'd become gay,” he said, “So I’d avoid people, avoid men. I wouldn't watch some of my favorite things such as boxing or martial arts because the men were half naked.”

His OCD convinced him that he was HIV positive and even went as far as to get tested over and over again because he didn’t trust the results.

Flores said he grew up in a conservative Christian household in which being gay was considered a mortal sin.

“I'm not religious anymore to put this into context, but at a time, I was deeply homophobic,” Flores said. “As I got older, I realized people can't choose who they are. And even if they could, it's not any of my business.”

But his views changing didn’t mean the OCD went away. However, he has learned to recognize his intrusive thoughts for what they are.

“You learn to understand that the thoughts don't necessarily reflect any parts of you,” Flores said. “The brain creates random thoughts.”

Advice for supporting a loved one with OCD

If someone you know thinks they may have OCD, Dr. Pittenger at Yale recommends listening to them.

“There can be a lot of shame associated with thoughts that are coming into their minds,” Dr. Pittenger said. “And so non-judgmental support is really important.”

He also said that people with OCD often know that the things they’re feeling and doing are irrational — and because of that, they keep quiet.

“And so it's people with the most distressing, intrusive thoughts — for example, inappropriate sexual thoughts or thoughts of them committing violence against others — things that they're deeply ashamed to share. Often they'll hide those, and that can delay diagnosis and treatment,” Dr. Pittenger said.

He said medication prescribed to treat OCD can help — and therapy can be especially effective.

This story was edited for digital by Obed Manuel and edited for radio by Ally Schweitzer.