I Have OCD—This Is What It’s Really Like

When Samantha Jean would bump into—or even brush past—her middle-school classmates, she would immediately feel dirty. As soon as she got home from school, Jean would shower, throw out any clothes that had come into contact with potential germs, and wash her hands until they were raw. That was 15 years ago in Buffalo, New York, but Jean—now 28—still battles these same fixations: She has obsessive-compulsive disorder, or OCD, and she’s never sure when some new bizarre belief will take over her brain.

With OCD, people can have unwanted and repeated thoughts and feelings that can lead to repetitive behaviors to help address or get rid of the obsessive thought. For Jean, her obsession was that everything is dirty; her compulsion was to wash and keep things clean. It wasn’t until then-13-year-old Jean’s parents took her to therapy that she was diagnosed with OCD and received treatment, including medication. Check out these 8 early signs of OCD to take seriously.

That’s when she started to understand what it means to live with the disorder. “I remember one of my therapists said you might not always be afraid of germs but [OCD] will always be there and it’ll come back in different ways,” Jean says. “The obsessions don’t always stay the same.”

Courtesy Samantha Jean

The obsessions and compulsions aren’t always visible, either

One of the common misconceptions about OCD is that it exclusively relates to orderliness, cleaning, and perfectionism. But that’s not what Rose Cartwright, 32, experienced. Awful, debilitating, intrusive thoughts—a type of OCD that is sometimes called Pure O—exploded into Cartwright’s world when she was 15 years old. “It was this nightmarish level of anxiety from the get-go,” she says. “I didn’t understand where these thoughts were coming from; I thought the fact that I had these thoughts was evidence enough that I had done something terrible.”

Someone with Pure O experiences obsessive, unwanted ideas and performs compulsions or rituals as a result. David Austern, PsyD, clinical instructor of psychiatry at NYU Langone Health, notes that the term Pure O isn’t often used in the medical community anymore and could be a bit misleading. That’s mainly because treatment for Pure O and OCD is the same. One distinction for sufferers, though, is that with Pure O the compulsion and or ritual is a mental response that isn’t visible (unlike Jean’s hand washing).

Cartwright remembers taking the GCSE exams—standardized tests in England—a year later, at age 16, and thinking that these thoughts would never end. “I remember going into those exams and sitting in the exam hall and trying to do these tests and having intrusive thoughts every second that my pen was on the page, and thinking, ‘Is this my life now?’ because it had been literally a year of 24-7 thoughts,” she says. Learn these 8 surprising causes of OCD.

“I would wake up in the morning and have a few seconds where I forgot where I was or who I was, and then I would have my very first intrusive thought, and then I would have them all day every day until I went to bed at night,” Cartwright says.

Michael Clement/Courtesy Made of Millions

As the years passed, her thoughts shifted to sexuality, about orientation and commitment. As a result, she avoided films with sexual content, physical contact with people, and social occasions.

There is one effective treatment that is used most often

Cartwright found that her search for answers landed her online, where she diagnosed herself before seeing a series of doctors and therapists for OCD through her early 20s. Each of them had a different therapeutic approach; some prescribed medication, which didn’t provide much relief. “They just kind of took the top off the anxiety and the bottom off the depression, but they did nothing to lessen the intensity or the frequency of the thoughts themselves,” she says. Make sure you know these 9 signs you could have an anxiety disorder.

In her mid-20s, Cartwright met with a therapist in the United States who finally diagnosed her with OCD and treated her with exposure therapy. This type of treatment, also called exposure and response therapy (ERP), is a type of cognitive behavioral therapy that is the front-line treatment for OCD, according to Dr. Austern. “ERP is designed to have people face the fears that their OCD is essentially telling them they must avoid by doing something, thinking something, or avoiding something because if they confront these obsessions, whatever the content of them is, it is going to be unbearable,” Dr. Austern says.

After educating the patient and normalizing the experience, Dr. Austern says, doctors will help the ERP patient rank the situation he or she is avoiding according to how challenging it would be to face that situation without performing a ritual. The patient then goes into that situation without doing the ritual, such as saying a phrase, counting, or avoiding something.

“If it is something that people might call Pure O, it gets a little trickier because we need to know what they are doing in their minds,” Dr. Austern says. “And we can’t necessarily observe the ritual in the room.” The goal is to have patients get used to the discomfort of these situations and learn that they can face it without performing a ritual.

Cartwright believes, however, that there is no one-size-fits-all OCD treatment. “Everyone has to figure that out, and I’m still in the process of figuring that out myself,” she says. “It’s not sort of a game with different levels, and then you get to the end level and you’re done. It’s an evolving process.” For Jean, that includes both cognitive therapy and medication.

Cartwright’s therapy process gave her relief, confidence, and some clarity to pitch a piece on her story to the Guardian. “I knew by then that this was something that was being experienced in secret by thousands, if not millions,” Cartwright says. “So I just felt compelled to tell my story. It wasn’t a choice—it had an energy all its own.”

Michael Clement/Courtesy Made of Millions

Her story caught the attention of Aaron Harvey and motivated his search for as much information as possible about Pure O. Harvey, who grew up in the suburbs of Orlando, Florida, started having his own intrusive thoughts around eight years old. He didn’t tell anyone in his home or school about his internal struggles—and ended up grappling with them on his own for more than 20 years. “The idea of who you are and what your character is starts to crumble in front of you because you are sort of defining yourself, and those thoughts and images make you question who you are and what you’re capable of,” he says. Know these 8 signs that you could have OCD.

Ironically, his psychotherapist of six months had no idea that his symptoms were OCD. Dr. Austern notes that OCD is a specialty, so fewer therapists have extensive OCD training. There are, however, online resources for individuals who think they are experiencing OCD, such as beyoncocd.org.

Over the next two years, Harvey experimented with different medications and some exposure therapy and consulted various psychiatrists who offered many different diagnoses. Much like Cartwright and unlike Jean, Harvey didn’t find much comfort in medication.

Sharing personal experiences with OCD and mental health issues are key

And as Harvey learned more and more about Pure O, he also dealt with some anger. “I was angry that this whole thing could have been prevented when I was 13 if there was better information available,” he says. “My parents worked in health care, I’m in a middle-class family, my parents are together, I was raised in a happy and healthy family, as a white male in America, and with all of my privilege, this information did not arrive to my family or me.”

This lack of information promotes the misconceptions about OCD that promote its informal use in casual lingo. Jean—who doesn’t identify with the term Pure O—isn’t offended by this lax usage, but says it’s good to start making people aware of what it really means. “People who say ‘I’m OCD’ obviously could never know how scary and debilitating real obsessive-compulsive disorder is,” Jean says. “It’s definitely just a lack of awareness.”

Harvey doesn’t judge people who use the term “OCD” as an adjective either, but he too thinks more education is necessary, especially about the types of compulsions he and Cartwright have that aren’t visible, and specifically about Pure O. It’s hard for people to understand Pure O because it isn’t as visual as other OCD tropes, he notes. “All of these avoidance things are actually the real compulsion,” Harvey says. “That’s why ‘pure’ is an important phrase because it kind of feels like things are purely happening in your head.”

Both the misconceptions about OCD and his own anger about the lack of information online motivated Harvey to spread awareness and advocate. He reached out to Cartwright, thanking her for writing her story, and together they created intrusivethoughts.org. Now the pair is building up Made of Millions—a website dedicated to inspiring grassroots change to combat the stigma of mental health. Try these 9 natural treatments for OCD.

Harvey says that coming out with his own story on the platform wasn’t something he looked forward to, but he knew it was the right thing to do because of the positive impact it would have on others. “Obviously it’s a scary thing, but once I did it, I felt good because I was able to use what I do for a living—advertising, design, creative, marketing, writing—and use all that skill that I acquired over the last decade and bring that into something that actually needs to reach people,” he says.

Michael Clement/Courtesy Made of Millions

Cartwright hopes that Made of Millions will provide people who are suffering with the space to share their stories and explore the emotional side of mental health, beyond the therapy courses and information about medical treatment that other sites offer. “We want to hear from people in different countries about what their experiences are and what their stories are and learn from that, and I think that that’s quite different from feeling like you’ve reached a conclusion and you’ve got conclusions to dispense and teach people,” Cartwright says. Next, check out these 6 proven ways to cope with obsessive-compulsive disorder