This article originally appeared on Tonic in the US.
What’s the first thing that comes to mind when you hear about obsessive compulsive disorder, or OCD? Maybe it’s tidiness—aligning objects just right. Perhaps it’s hand washing, counting steps, or checking the burners on the stove.
In truth, OCD can consist of any persistent, intrusive, obsessive thought that causes anxiety, and is paired with a behavior that attempts to make the anxiety go away. The scope of it can reach much further than germs or counting and checking. Some obsessions are darker, harder to talk about, less common, and can remain undiagnosed for years, even if a person seeks help.
I have had OCD since I was a young child. I’ve dealt with stereotypical symptoms, like hand-washing compulsions and a fear of germs and sickness, as well as more rare or misunderstood obsessions: a fixation on bodily functions like swallowing, or the need to always be seen as perfect. Sometimes all these obsessions are present in my mind. At other times, one can take center stage, while the others wait in wings. Depending on the year, or even the minute, my OCD can look completely different.
At its core, for me and others, OCD is a disorder of doubt. A person can’t be sure that their thoughts aren’t indicative of something that will happen in real life. They’re not sure about their safety, their intentions, their motives, their realities. And yet, most people with OCD are painfully aware that what they’re thinking isn’t true. A person with contamination obsessions, for instance, knows deep down that they don’t need to wash their hands for the 100th time, but they are haunted by the reality that they can’t be sure that there aren’t still germs lingering.
Though OCD usually emerges in childhood, it can take an average of 14 to 17 years for people to find treatment. I wasn’t diagnosed until I was 26, and, through therapy, am still gaining new insights into my obsessions.
The most common treatment for OCD is Cognitive Behavioral Therapy (CBT) and Exposure and Response Prevention, or ERP. The purpose of ERP is to come up with different ways of exposing a person to the things they’re afraid of, and to have the person resist any compulsion to stop the anxiety. Over time, this can help reprogram the brain to respond differently to those triggers. In ERP and CBT, a person might have to willingly say or do things that terrify them, dropping into the scariest parts of their psyches, and admitting to things that they fear will make their friends and families turn on them.
A therapist told me once that there’s no hierarchy to suffering—one obsession isn’t inherently worse than another. The worst obsession to have is the one you have right now. Still, some forms of OCD are more challenging to diagnose, and the content of the obsessions are so taboo that people suffer without finding the help they need. Sometimes they don’t even know that they have OCD. In this series, we’re looking at some OCD subtypes that are rare and others that are taboo. Our goal is to illustrate the mosaic of experiences associated with OCD.
There are seven subtypes of OCD described below. The people featured, including myself, shared obsessions that once gripped their lives. Our stories will illuminate what goes on in the OCD mind, and hopefully help those who might be going through similar struggles.
Because of the sensitive nature of the experiences shared, we’ve obscured many of the identities of our sources by using their first names only, a middle name, or a pseudonym.
Hyperawareness OCD: "I Couldn't Stop Thinking About Blinking"
Hyperawareness OCD is an obsession with a part of the body, or with an involuntary bodily function.
Every morning for 25 years, Christopher Weston’s first thought when he woke up was: “Am I blinking?”
The thoughts persisted throughout the day. Was he still thinking about blinking? What about now? Would he always be thinking about blinking? Was this going to be his whole life, thinking about blinking?
“I thought I’d go crazy,” he tells me. “I thought I'd end up in an institution, and that this would be my whole life. I’d think that even ten years down the road, I was still going to be thinking about my blinking."
Weston has hyperawareness OCD, also called sensorimotor or somatic OCD. It’s when a person becomes obsessed with body parts, or common bodily functions that are involuntary. Blinking is a common obsession, as is breathing or swallowing.
When Weston was in his twenties, his career in the local public health department in his city led him to interact with people with schizophrenia. One person he met thought there were wires in his neck, and that led Weston to begin to think about his own neck. It evolved into an obsession with the feeling of his shirt collar against his neck. “It was very, very anxiety-producing, because I had no idea what it was,” he says. “I was like, ‘Why am I thinking about this?’" When the blinking obsession arrived, it’s the one that stuck.
He looked for help, but couldn’t find any therapists who knew about what he was going through. “They didn't understand what it was,” he says. “Nobody really even talked about hyperawareness OCD.”
Suddenly I was aware of every single swallow, and was thinking anxiously about what the next swallow would be like.
He used to Google, “I think about my blinking all the time,” and very few hits would come back. If he talked about blinking in groups with other people with OCD, they found it hard to relate. “People are scared to talk about it, because it's so weird,” he says. “We think it's weird, and so we just keep it to ourselves until maybe a few people come out about it.”
Weston says it was easier to just tell people he had OCD and continue to suffer alone. “I didn’t want anyone to know specifics,” he tells me. “It was better just to keep it at OCD, as people still think OCD is just perfectionism or [obsessions about] contamination. However, when you start bring in other manifestations, what are others going to think? That was my fear.”
I remember the exact moment when I started to think about my swallowing. It was 2015 and I was at a magazine internship eating a can of Amy’s Vegetable Barley soup.
It was a year before I would be diagnosed with OCD, and suddenly I was aware of every single swallow, and was thinking anxiously about what the next swallow would be like. It got to be so bad that I started to take lunch breaks alone, going to a space I could rent for $20 an hour, because eating caused me so much stress. Then, a few months later, it was magically gone. I also remember what I ate then too: a friend came over and we ate hard boiled eggs and croissants; it was the first time I had eaten in front of another person in months.
My swallowing obsession stayed away until the end of 2016, but then it came back. When I was diagnosed with OCD for other issues, contamination and perfectionism, nobody talked to me about hyperawareness OCD and how that was an obsession of its own. In therapy, I ate lunch with my therapist, trying to get over the anxiety of swallowing, and the exposure helped a little, but like with Weston, it never went away completely.
Jon Hershfield, a psychotherapist and the director of The OCD and Anxiety Center of Greater Baltimore, tells me hyperawareness or sensorimotor obsessions are obsessions of attention. At any given moment, you’re getting signals to the brain about what different parts of your body are doing, like where your hands are, what your heart rate is, or if your stomach is full. But most people don’t pay attention to these things. Everyone blinks and swallows, but rarely thinks about it.
But when you do start to think about it—even for people without OCD—these involuntary processes can become heightened. “You start to notice that it's kind of weird that we do these things and we don't have full control over it,” he says. “Some people with OCD, they get stuck in that state where they become hyperaware of some part of their body, of some signal that they're getting in their brain.”
Hershfield says for that most of his patients, the anxiety lies in the fear that they’ll never stop thinking about the blinking or breathing or swallowing, or whatever it is. “Of course, the more they monitor it, the less automatic it feels, the more controlled it feels, the more it seems like they're never going to stop thinking about it,” he says. That produces a lot of other obsessions like: What if this drives me crazy? What if I'm permanently distracted? What if I never remember what it felt like to not think about these things? What if it interferes with my social life?
Hershfield first encountered hyperawareness OCD at an International Obsessive Compulsive Disorder Foundation (IOCDF) conference, where he met someone who lived in a constant state of anxiety because they always thought about where their arms were positioned in space, and if their arms were positioned correctly.
It wasn’t until I attended an IOCDF conference last summer, and went to the session (run by Hershfield) on hyperawareness OCD that I realized I had it. It was like listening to a group of experts give a presentation about me, yet they were describing a stereotypical case of hyperawareness.
Weston is right that it’s a hard obsession to talk about. I didn’t even know that it was one, which sounds strange, but when your life is filled with anxiety, some obsessive thought patterns can slip through the cracks.
"What if I never remember what it was like to not think about these things?"
When I left the hyperawareness session at the conference that day, I went back to my hotel room and sat on the floor for a long time, crying. It can be frustrating for those of us who have OCD to recognize you have another obsession you need to deal with—but that wasn’t why I was crying. During the talk, when they talked about swallowing, it was hard for me to look at the word “swallowing” projected on the screen from their PowerPoint presentation. A woman at the end raised her hand and said that it was hard for her to look at the word “swallowing.” I felt amazingly understood—about something I never would have thought someone else would understand.
Brian, 30, tells me that I’m the first person he’s talked to who has an obsession like his. “Honest to God, like after years of talking to people and listening to advice about OCD, you don't hear this come up,” he says.
Brian has had OCD since he was about 13. He started to have intrusive thoughts, and needed to repeat certain words. He thought it was just a phase he would grow out of. But as time went on, his symptoms got worse, and he finally told his parents, “I think there’s something wrong with me.” A counselor diagnosed him with OCD shortly after.
One day, Brian noticed a mole on his hip and realized he’d never seen or thought about it before. The mole became his new obsession. “It became a thought that I couldn't get rid of,” he says. “And I would obsess about this mole, and still do to this day, actually.”
Brian says that the worry that he would never stop thinking about the mole is accentuated because he was thinking about a part of his own body. “You're always going to have your body with you wherever you go,” he says. “That's always going be there. So the fear is that the obsession will always be with it.”
As Hershfield explains, it’s not that Brian is afraid of the mole—it’s an obsession and fear of thinking about the mole, and worrying that it will never go away. Hershfield says that for people with this kind of OCD, even though it’s more rare, this is how we know it’s just like any other OCD—there’s an underlying fear or doubt related to an obsession.
For some people, like Weston and Brian, the main issue is the fear they’ll never stop thinking about it. “As a result, this has kind of damaged your narrative of who you are on this planet,” Hershfield says. “It's this fear of: 'I'm never going to really truly be myself' because there's always going to be an asterisk at the end that says, 'Oh he's always thinking about his swallowing.' In the attempt to protect the narrative, all of these rituals come up to avoid thinking about the swallowing or distract from thinking about the swallowing, and then it just creates a feedback loop. The more you resist, the more intrusive it becomes.”
Some clinicians don’t recognize that people with hyperawareness OCD have compulsions. But Hershfield says they’re there, they just might not be so obvious. He says there tends to be a lot of mental rituals taking place, reviewing or checking to see how the bodily sensation feels, or trying to replace obsessive thoughts with other thoughts. A person might also avoid situations that trigger those thoughts, or constantly seek reassurance that they’ll one day stop obsessing.
Weston eventually was treated by Hershfield, and attempted not to get rid of his troubling behavior or thoughts, but accept their presence and live with the uncertainty around whether they would ever go away. A more formal version of this strategy called ACT, or acceptance and commitment therapy, is an often complementary treatment to exposure therapy. Weston says it was the first thing to help him.
“[Hershfield] treated it as not necessarily as an exposure, but to accept, 'Okay, well I'm just a guy that thinks about my blinking.'" he tells me. "That's the way it's gonna be. I'm just gonna think about my blinking all day. That's the way it is. That's just my thing." By accepting the thinking about blinking over many sessions, Weston says the obsession started going away.
Hershfield says he also helps people through exposure therapy plus a combination of ACT and mindfulness. At first, it seems to me like mindfulness would be the opposite of what you’d want: sitting and doing nothing but thinking about your breathing or body. But Hershfield says there’s a difference between watching your behavior in a mindful way, not trying to intrude or change it, and actively thinking about breathing and trying to figure out if you’re breathing in the “right” way. He's teaching people to be less judgmental about their internal experiences.
In therapy, Brian had tried looking at pictures of his mole, writing about the mole until he felt uncomfortable, and exposing himself to his thoughts about it. But sometimes when he felt he had a grasp on the mole, other body parts would take its place. For a while, it was his belly button.
Brian says he can only find some relief if he tries to accept that he’s thinking the thoughts. "You have to get to the point of thinking, 'Fuck it,' to yourself, and not caring—even if you’re thinking about it," he says.
This is a lot easier said than done. There shouldn't be any trivializing over how upsetting it is to think about blinking, or swallowing, or a mole, even if those things seem banal. Weston and Brian also both take medication to help their symptoms.
"It never would have crossed my mind that other people obsess about swallowing, and then I found it was in the top three most common sensorimotor obsessions."
Still, after 25 years, Weston finally found some relief from his blinking obsession starting about five years ago. He’s now 52. He has days where he doesn’t think about the blinking at all. “Sometimes it'll come back and it'll be around for a couple days, and it'll cause me some discomfort, but not to the point where it did before," he says.
Weston thinks the biggest challenge with hyperawareness is that most therapists don’t understand it, and that only the ones who specialize in it can help you. Hershfield agrees, saying that the first hurdle he faces with his clients with these obsessions, when they find him, is their sense of isolation. It never would have crossed my mind that other people obsess about swallowing, and then I found it was in the top three most common sensorimotor obsessions.
Weston says that after so long not talking about it, he doesn’t really care what people think. He’s retired from his job, but has gone back to school to get his Masters of Family Therapy degree. With it, he wants to help others with OCD. After our phone call, Weston emailed me saying that if I ever needed to talk about swallowing he was there.
“If I can get better,” Weston wrote me, “Then anyone can.”
Emotional Contamination OCD: "What If Being Near Someone Causes me to Lose My Values and Attain Theirs?"
People with emotional contamination OCD obsess over the thought that the traits of another person will “infect” them.
It might begin by meeting someone who is mean, or immoral. Then comes the worry that standing near them, touching their shoulder, sitting in a chair they once sat in, will transfer those traits to you—like the spread of a virus. Once the thought of contamination begins, it’s hard to stop. Unlike contamination OCD, which is an obsession with germs, diseases, chemicals, emotional contamination is a more abstract threat.
“It’s an obsession around the concept of a person, or a geographical location, or an object that is somehow dangerous,” says Carol Hevia, a psychologist at McLean Hospital who has been treating OCD patients for 25 years. “By touching it, sitting near it, going to a place that it’s from—whatever the trigger is—a person thinks they will somehow become contaminated with its essence.”
The contamination can often be rooted in a personality, or a person that the OCD sufferer determines to be “bad.” In a case study Hevia wrote about for the International OCD Foundation, a 25-year-old man named Joe had obsessive thoughts that he would be contaminated by one of his roommate’s at college, Connor. Connor was “wildly successful in academics and in the business world after graduation by being ruthless and nasty and by taking advantage of those who helped him,” Hevia wrote.
Joe was terrified that if he came into contact with Connor, he too would become “ruthless, uncaring, and a cannibal of friends and foes.” Joe avoided any friends who interacted with Connor, the library where Connor studied, and switched his major from business to Russian so that he and Connor wouldn’t have any crossover. If someone in one of his classes had taken a course in the business building—where Connor took classes—Joe would have to drop out of that class, throw away the clothes he was wearing, along with any books or homework.
It can spread through the air, through the internet, through association—everything and anything can be contaminated at any time.
Joe dropped out of school, but still continued to get rid of his belongings since they had a prior affiliation with Connor. Joe moved into an apartment above his parent’s garage so that he could live in a “Connor-free” zone, and couldn’t go into the main house because Connor’s name had been mentioned there. When he tried to take classes online, he found that even the internet was contaminated by Connor, because Connor had social media profiles also on the web.
“When Joe reached the point where he was preparing to move into another apartment in a town twenty miles from his parents, and he was about to buy his fifth computer, and he no longer uttered any words with the letter “C” in it, he called a behavior therapist to get help,” Hevia wrote.
People will avoid the person or idea that’s contaminating them, but it quickly becomes a gargantuan task. The contamination can spread, like the spreading of germs or radiation, Hevia tells me. It can spread through the air, through the internet, through association—so that everything and anything can be contaminated at any time.
The contamination can spread through language, so even hearing a word or phrase that sounds like the obsession can trigger fear and feelings of danger. People can end up avoiding television, newspapers, radio, the internet, computers, and more, completely isolating themselves from any risk of a potential reminder of their obsession.
“It's very common to see someone say it's spreading through the air like an infectious disease, like TB,” Hevia tells me. “It spreads through the internet, it spreads through the cloud, it spreads through the air where airplanes fly. And so in that sense, it's like, how does the person get away from it?”
Hevia gives me another example: If a person develops emotional contamination around say, Hershey, Pennsylvania, soon it wouldn’t be enough to avoid that town. They wouldn’t be able to go to any towns surrounding it, then they might not be able to eat Hershey’s chocolate bars because they share the same name. Then, they might have to stop eating or being near Hershey’s chocolate bars, which means avoiding parts of the grocery store. “And then they realize that Hershey's makes other foods products also, and need to avoid them, and they get stuck in the grocery store for hours reading labels to make sure they don't have any contact with that,” Hevia says.
Andy, a 22-year-old who lives in Georgia, has had different OCD symptoms since he was about seven years old. Usually, they come and go within a few months, but emotional contamination has bothered him for more than two years.
He has had to avoid a whole town that he went to school in, because he was bullied there when he was younger. And he can’t associate with anyone from that town, or any objects from it either. “I'm anal, like if I touch any clothes or anything associated with it, I get contaminated,” he says.
If he’s had negative experiences with a person, they can become a contamination risk too—even if he knows logically they’re “good.” “It's definitely negatively impacting my relationships, because I'm not able to emotionally invest myself when a relationship becomes triggering,” he says.
At the moment, his roommates are sources of contamination, and so he does his best to keep their relationship as superficial as possible. He says that he knows, on a rational level, that if he disagrees with someone, it doesn’t mean anything will happen to him. “But then I start fearing that, what if I lose my values and attain this person's values and become like that?” he says. “And if I touch something that this person touched, or if I shake his hand or something like that, I feel the need to wash my hands. Otherwise I feel contaminated by that eventually.”
He says that emotional contamination is difficult to deal with because it’s so nebulous and abstract. Trying to get a hold on it is like grasping for air. “The more mental, abstract, the more emotional, the more existential neuroses, the worse it is,” he says.
Emotional contamination is rooted in magical thinking, a psychological concept that thoughts, actions or beliefs will lead to something happening in the real work. It’s present in many subtypes of OCD, but especially this one. Sometimes, emotional contamination can even be misdiagnosed as psychosis if a therapist hasn’t heard of it before, Hevia tells me. But she says it can be treated.
Emotional contamination is difficult to deal with because it’s so nebulous.
Andy hasn’t yet sought treatment for his OCD, though he says he wants to, and thinks that therapy is the best option for others like him. Hevia wrote that in therapy, Joe started saying and writing Connor’s name on pieces of paper, and hanging them up around his computer and his bed. Eventually, he was able to say Connor’s name, with the help of his therapist. He visited his old college campus, and sat outside the business building. He got in touch with his friends again, and signed up for classes. As one of the hardest exposures, he even emailed Connor.
“Though they never became close friends, Joe was no longer haunted by Connor’s presence in his OCD life,” Hevia wrote. “When he would think of Connor, and even when he thought about the dreaded personality characteristics, he would not try to push the thought away but say to himself, “Yup that’s Connor—what a guy!” and go on with his day.
Pedophilia OCD: "I Would Avoid Kids Like the Plague. I Wouldn't Even Want To Look at Pictures of Babies, I Would Be So Scared."
Pedophilia OCD features an obsession with the idea that you might be attracted to children, and could act on that attraction.
On her 26th birthday, Kate thought about killing all the guests who had come to her party. She didn’t understand why she would think that or what it meant. She certainly didn’t want to kill her friends and family—but why would she think it if it didn’t mean something?
“This was the beginning of the debilitating part of OCD for me,” she tells me. “I basically couldn't get out of bed at this point. I could sort of go to work and manage, but otherwise I was afraid I was going to think about killing a room full of people.“
When Kate went to a talk therapist, the therapist suggested that Kate get in touch with her anger from being bullied as a child, and said she had bottled up frustration. She eventually told Kate to have a glass of wine when she got home from work, and to try and relax. When that didn’t work, she sent Kate to a psychiatrist.
Kate told the psychiatrist that she was scared she was going to hurt the people around her, and he asked if her thoughts were focused on one particular person. At the time, the thoughts racing through her mind centered on killing her boyfriend, the person closest to her.
The psychiatrist asked her to call her boyfriend. He then told Kate’s boyfriend that she was dangerous, and he needed to be careful because she was having violent thoughts.
“He told him I had the potential to hurt him, which was the farthest thing from the truth, but the scariest thing anyone with OCD can hear who has harm-based OCD. Our biggest fear is that we are dangerous,” Kate tells me.
Luckily, Kate’s boyfriend didn’t take the psychiatrist’s warning seriously, and Kate left with a prescription for an SSRI antidepressant, which helped a little—until her thoughts went from hurting her boyfriend to harming her new nieces and nephews. When she held her nephew while babysitting him, she remembers thinking that she could drop him down the stairs. The rest of the day, the thoughts plagued her: Oh my god, I want to kill him, I want to throw him down the stairs.
Eventually, Kate’s harm OCD transformed to a concern about pedophilia: When she would change her niece’s diapers, she would think, Am I attracted to this, and do I want to molest her? Why did I have this thought? This must mean something about me. This must be who I am and what I want.
“That was about the scariest thing a person can think about, because I loved these little people so much,” she says. Kate would seek reassurance, a common compulsion for people with OCD where they need another person to tell them what they’re obsessing about isn’t true. Kate would call her mom and tell her she was having scary thoughts, and her mom would reassure her: “You’re a good person. You’re not going to hurt anybody.” It would take the edge off, but only for about ten seconds.
28-year-old Marie’s OCD thoughts first centered on her dad. When she was around ten, she thought about if she was attracted to him or not, if he had done something to cause those thoughts, like molesting her—which had never happened.
When she would change her niece’s diapers, she would think, Am I attracted to this, and do I want to molest her?
As she got older, her thoughts morphed to wondering if she had impure thoughts about kids. She kept thinking and worrying that she had a deep, dark secret that she was attracted to babies. This was in the seventh grade.
She wouldn’t be able to sleep each night until she got up and confessed what she was thinking to her mother. She went to see therapists but was scared to tell them what her thoughts were about. Eventually, she stopped going.
Two of Marie’s second cousins had OCD, but with more common presentations: handwashing and physical compulsions, rather than just a deluge of thoughts. At 20, from reading blogs online, she diagnosed herself, but at the back of her mind was still unsure if her thoughts came from OCD or something darker. And because her fears revolved around molesting children, she still couldn’t bring herself to talk about them.
Marie would ask her friends if they also thought kids were cute, finding reassurance that it wasn’t just her noticing. She was terribly afraid of babies in diapers. Kate avoided thinking any thoughts about kids at all.
They avoid children. When this is not possible, their anxiety and uncertainty is heightened.
People with pedophilia OCD, or POCD, are tormented by their thoughts, says Annabella Hagen, the Clinical Director and owner of Mindset Family Therapy in Utah, who has treated many patients with POCD. People often later say that they thought they were going crazy before they got diagnosed with OCD.
“In desperation, they review every movement they made around a child to help them figure out whether their actions were inappropriate or not,” she tells me. “They perpetually seek reassurance from loved ones. They know they would never hurt a child, but they need to hear it from someone else. They search for answers everywhere they can. They avoid children. When this is not possible, their anxiety and uncertainty is heightened. Self-loathing occurs so self-compassion is often non-existent. They believe they should be able to control the thoughts, and since they cannot, they are constantly judging themselves. They become depressed.”
It’s hard for them to seek treatment, because they’re afraid they may be accused of being pedophiles. “POCD is more common than we think,” says psychotherapist Nancy Laren, who has also seen many patients with POCD. “Sufferers often live in fear that family and friends will find out the nature of their thoughts and be ostracized. They fear they will be labeled as a pedophile, disgusting or evil. People with this type of OCD feel extreme shame and guilt for their thoughts.”
But pedophilia OCD is not the same as pedophilia. Most people with POCD aren’t plagued with desires. Their thoughts are one step removed: They wonder if their worry about pedophilia means they have desire.
Marie says she knows she’s never actually been attracted to children. The thoughts go like this: “You'll see a kid and be like, Aw they're so cute,” she says. “Then you’re like, Oh, my god. Does that mean I'm a pedophile? OCD will try to spin that like you’re this deviant person. All I wanted was to be a parent one day, and I would never hurt someone. It's sad because I would avoid kids like the plague. I wouldn't even want to look at pictures of babies, I would be so scared.”
Jonathan Grayson, who has been treating OCD since 1978 and is director of the The Grayson LA Treatment Center for Anxiety & OCD, says that not only is the content of POCD taboo, but the treatment is too, since exposure therapy requires putting a person face to face with the ideas of pedophilia.
He can’t just reassure a person that they’re not a pedophile—reassurance doesn’t work, as Kate and Marie learned. Instead, people with POCD have to become comfortable with uncertainty, with the risk that their very worst fears are true, and figure out how to live their lives despite that risk. “I'm not gonna say to the person, ‘You're definitely not a pedophile,’ because that's not gonna do any good for them,” Grayson says. “They're not going to believe me.”
Grayson has brought patients into a children’s store and asked them to handle children’s underwear. He’s had them watch Toddlers and Tiaras and point out moments when the kids look pretty. Other exposures might re-introduce behaviors a person has been avoiding, says Hagen. Like someone who has been avoiding changing a diaper or giving a niece a bath will start doing so again, even if it makes them anxious and fearful. Grayson says that the alternative, ironically, can be much more damaging to the children in a person’s life, since parents or relatives with POCD can avoid giving affection, spending time with, or caring for children because of their fears.
When Kate started exposure therapy, her first exposures were to simply think about her nieces and nephews. Later, she would narrate scenarios she was afraid of as if they were actually happening. Kate would sit sobbing as her therapist prompted her to describe molesting children: “Tell me what you’re going to do next.” At first, she couldn’t do it, sobbing, “No, no. I can't, I can't, I can't.”
In therapy, Marie wrote out scripts and scenarios of things she feared, like that she was an “undercover pedophile” and was “going to go to jail and die” and was “going to hurt so many kids,” she says.
Eventually, Kate would go to playgrounds with her therapist and, sitting out of earshot of the kids, say what she was afraid of—“I’m going to molest that kid,” for example.
As painful as the exposures were, they worked. Kate began to finally understand that what she was afraid of wasn’t true. “It became pretty clear to me that the fear that I was a pedophile was based on that fundamental distrust, which I think is permanent in every kind of OCD,” she says. “We just fundamentally distrust our own selves and our own urges. We don't believe that who we are is going to be good because we have this stream of thoughts.”
Even with her symptoms mostly under control, Kate worries that other people with pedophilia OCD are reluctant to seek treatment, or will be misunderstood by doctors, family, friends, or even others with OCD. Marie echoes those concerns.
“I knew in my heart I had OCD but I still thought, There's a 50 percent chance that I'm going to walk in here and they're going to tell me that I'm a bad person and/or call the cops,” Marie says. “I legitimately thought that was a possibility. And I would have been like, fine. If you have to take me out of the general population and put me somewhere where I can't hurt anyone, great. Whatever makes this go away. Whatever makes this stop, I would have done it.”
Perfectionism: "The pressure becomes so great that it’s easier to give up altogether."
Perfectionism is the obsession with appearing—and being—“perfect.”
One day in my junior year of college, I found myself frozen at the door of my afternoon class, unable to turn the door handle and walk inside. I was about five minutes late. Through the window, I could see the 15 or so other students inside, their backs facing me. My professor had already started talking.
Just go in, I told myself. What are you waiting for? But as I stood there, the humiliation of being late, the thought of all those heads turning and watching me enter the room, imagining what they’d be thinking of me in that moment, stopped me. I took my hand off the door and went home.
Once I had skipped the class, the anguish of truancy prevented me from going the following week. How could I show my face this week when I had missed last week? The effect snowballed. By the end of the semester, I had failed the class, something that surprised my teacher. (We later corresponded after I graduated.) In the first class sessions, I had seemed engaged and participatory. I had had ideas for our upcoming assignments, and was excited to do them. So what had happened?
When I was in elementary school, I remember being described by my teachers and my parents as a perfectionist. The comment was paired, often, with the hint of a smile. Being a perfectionist wasn’t a problem, the smile implied. It was too much of a good thing, like having too much money. It was a trait that made me a good student, fastidious, and precocious.
Perfectionism is not unique to OCD, but it can underlie many OCD subtypes—contributing to the need to do a ritual perfectly, or have things arranged just right. But perfectionism is often thought of as an OCD subtype of its own, says Jeff Szymanski, the Executive Director of the International OCD Foundation and a clinical psychologist who worked at McLean Hospital’s Obsessive Compulsive Disorder Institute, where he ran the Perfectionism group. Any extreme version of perfectionism, if it's rooted in obsessions and then compulsions—like avoidance—could be considered OCD, if it's extreme enough to cause distress or disfunction.
Perfectionism can look different from person to person, Szymanski tells me, but from his time at McLean, he saw some overarching themes: Perfectionists feel the need to rigidly follow rules, and think things must be done in a certain way or not at all. Perfectionists need to feel in control of a situation at all times. They have an excessive concern with making mistakes, especially if others can see those mistakes. They think making a mistake means something about their overall value as a person, and they have an overwhelming need to please others. Relationships with authority figures, like bosses, can be fraught with anxiety.
Perfectionists have trouble with prioritizing. When Szymanski had his patients make a list of ten things they wanted to accomplish, and then decide to give some 100 percent effort, some 80 percent, and others 50 percent, they struggled to do so.
Perfectionism is harder to gain insight about, because it’s a trait so knotted up with my personality.
“People had a very difficult time, and what that told me is that every time they came across a task, whether it was a strength of theirs or a weakness, whether they had expertise in that or not, they always felt like they had to perform at a high level,” Szymanski says.
My OCD diagnosis was mainly determined by my various contamination and health-related obsessions. I knew that those were an issue, and it was easier to differentiate those obsessions from me—my “rational” brain and thoughts. Perfectionism is harder to gain insight about, because it’s a trait so twisted and knotted up with my personality. I am a detail-oriented person, and a lot of the times it’s functional and it works for me. I even like this about myself. When it does work against me, it takes me longer to realize it.
Szymanski says he’s found that to be the case “over and over again,” and is a reality that makes perfectionism especially hard to treat, despite the suffering it causes. In Szymanski’s perfectionism group, the patients initially resisted the idea of eradicating it from their lives altogether.
Szymanski then read research from a professor of psychology at University of Kent, Joachim Stoeber, on how elements of perfectionism backfire, but there are parts of perfectionism that help people reach their goals. Szymanski says that when he acknowledged this, he realized where the hesitation in his patients was coming from.
“They were saying that embedded in the dysfunction is a lot of what actually makes them functional, and what makes them good,” he tells me. “It's why they got an A on that paper, even though they spent 40 hours working on the paper when they could have spent two hours."
So how do you tell the difference between healthy and unhealthy perfectionism? It’s when you move from a detail-oriented, conscientious place to a rigid and controlling one. When the ideas of perfection start to prevent you from doing anything at all. That’s when healthy perfectionism has been taken over by a dysfunctional one that insists that mistakes are catastrophic, and you have to live up to other people's expectations. This can become crippling and anxiety-inducing in many ways, because things that others would never even notice start needing to be perfect. The pressure becomes so great that it’s easier to give up altogether.
Szymanski calls this “protecting your potential.” If you fail at something, it’s not because you’re not perfect, but because you didn’t try. When Szymanski asks his patients what’s the biggest insult they could receive, a lot of them answer the same way: To be average. “I expected ‘slob,’ or ‘loser,’” he says. “But it was always being average. They never wanted to be seen as typical. If they were going to fail, they were going to fail hard.”
There’s a story in Judith Rapoport’s book about OCD, The Boy Who Couldn’t Stop Washing, about a law school student with contamination obsessions. He agonized over cleaning his apartment, how long the cleaning would take, and how quickly it would get dirty again. He eventually started to avoid going home so that its cleanliness would remain unperturbed by the messiness of his living in it. This escalated until he was sleeping on a park bench, willingly homeless to avoid his apartment. This might seem radically counterintuitive. How could a person afraid of contamination bear to sleep outside, and all the dirt that goes with it, all in the sake of cleanliness?
It’s similar with perfectionism. The desire for perfection can lead to a rejection of everything that’s just shy of perfect, which, by the way, is everything, since nothing in life is perfect. One patient of Szymanski’s said that at first that she didn’t know why she was in his support group for perfectionists. McLean is an in-patient treatment center, and she offered up her room as an example: “If you walk down the hall, my room is the third door on the left. Go in. It is a pig sty. I am clearly not a perfectionist."
Szymanski asked her a couple follow up questions: If she were to clean her room, what would the process be like? She said it would be exhausting, taking possibly the whole day, and would cause her to miss all of her sessions. She would need cleaning supplies, like bleach, because if she were going to clean her room, she’d have to do it correctly.
That’s perfectionism, Szymanski explains.
Treatment is challenging because Szymanski says he doesn’t want to make a person act stupidly or underperform—and you’ll have a hard time getting them to do so, he tells me. Sending an email filled with typos to a boss, for example, isn’t behavior a therapist wants to force on someone, even if it is an exposure. Weeding out healthy perfectionist qualities, like proofreading, isn’t the goal.
"Look, I want you hardworking, I want you competent, I want you thoughtful, I want you skillful,” Szymanski says. “That's not what I'm challenging. I'm not challenging your outcome, I'm not challenging your goals. I'm challenging how you're getting there.”
Where Szymanski focuses instead are areas in someone’s life where perfectionism isn’t working. One patient he had was a young woman in college who had trouble writing her essays because she would continually be editing herself while writing, resulting in laborious hours and a tortuous writing process. Szymanski asked her to write without editing, even if there were mistakes. He also asks people to show others assignments before they’re done, or put time limits on how long people can work on things.
A French book from 1886 called L'œuvre (translated as The Masterpiece) tells the story of an artist who becomes obsessed with creating a painting, a large canvas that he works on incessantly, but it never satisfies him. He paints on more and more layers until the canvas is destroyed, and then starts over, again and again. He becomes distraught and depressed, and eventually goes insane. Unfortunately, I can relate.
I’m just starting to deal with perfectionism now in therapy, after realizing just how much it affects my happiness day to day, and my self-esteem and self-worth. I chose an odd profession for a perfectionist—I am a journalist, often subject to quick deadlines, criticism from strangers online, and frequently edited by my professional superiors. I respond to criticism badly (though usually internally, because I don’t like to lose control of my emotions in front of others), but I have started to learn about knowing the difference between what to take to heart, and what not to. I am still a detail-oriented person. I appreciate thoroughness, planning, and research, and addressing my perfectionism won’t get rid of those qualities.
In a way, I think that writing has helped with my conception of perfectionism overall. The process of drafting, seeing a piece of work evolve, and knowing it’s all part of the process is the perfect kind of healthy exposure I need. A deadline is a wonderful thing, because it forces me to stop working. It’s a lesson that transcends just my job: nothing is ever perfect, but it won’t be anything if you don’t do it.
Scrupulosity OCD: "Every little decision I made became monumentally important for being on the right path."
Scrupulosity OCD is an obsession with morality, being good or evil, or sinning.
In the first grade, Eric Kupers, now 48, had to draw a picture for each letter of the alphabet for a school assignment. For the letter G, he drew a girl, but couldn’t get it right. He kept erasing it, over and over. Then the paper ripped and he panicked. He hid the paper and said he lost it. When his mom eventually found it, he felt so much shame and that he had done something terribly wrong.
He had 10 or 11 stuffed animals in his bed and one night started to say goodnight to each one of them, but did he do each ‘goodnight’ evenly? He’d have to start again. Was he having the right thought during each goodnight? Start over.
“There was the sense that if I didn't say goodnight to each of them in the correct way, each one would control some different part of my life and would make something bad happen,” he tells me.
These are his earliest memories of OCD-like behavior, already tinged with the obsession with right and wrong, good and bad.
Kupers is Jewish, but was raised in a non-religious household. In high school, he found himself pulled towards spirituality and mythology. He started hanging out with people who talked a lot about energy and spiritual concepts, and enlightenment.
Kupers started to have the thought that he was never going to find God, and this doubt turned into rituals he had to complete. It started with conquering fears: he had to conquer any fear that came up in his daily life. Then, he started to worry that he had already done something horribly wrong, unforgivable. To fix it, he had to do everything correctly if he had any hope of being a good person.
“I started to get really scared that I was off the path, and [wondered] how do I prove that I'm on the path?” he says. “I got obsessed with it, and every little decision that I made became monumentally important for how to do the right thing and be on the right path.”
Jack, 24, is also Jewish, but grew up in a religious Orthodox Jewish family, and went to a private Jewish school. He tells me that he was always very fixated on the rigid rules around religious holidays and the Sabbath. Eventually, he too developed an obsession around morality, what was right and wrong, took over.
Every thought, and every action he had, he would agonize over whether it was right or wrong. At the same time, he struggled with his sexuality and the fact that he was gay. He thought, over and over, "Is this something that is wrong? Am I living my whole life being wrong?"
He came out at 16, but didn’t date or have sex. He felt so conflicted that he signed himself up for conversion therapy. “It was not pleasant, and the only reason I did it was because of the guilt that I shouldn't be living my life this way,” he says. Every other area of his life deteriorated: He couldn’t get his homework done. He couldn’t go out with friends. Eventually, his scrupulosity led to complete avoidance. He stayed away from churches.
"I would get really scared whenever anyone would mention the devil or say 'Satan.'"
In college, Kupers’s fear morphed again, into the thought that he was going to go to hell. Unlike Jack, it wasn’t coming from a place of religion. Still, the thoughts intensified. They turned from hell to the devil.
“I would get really scared whenever anyone would mention the devil or say 'Satan' or something like that,” Kupers says. “It was my second year of college. I think it was probably 90 percent of my day, I was thinking about it. It was really hard to get through the day and I was just going moment by moment. Just doing all these strange rituals and retracing my steps. Felt completely stuck. It was just a huge thing to just make it to class and make it back to my dorm.”
Jedidiah Siev, a clinical psychologist and an assistant professor at Swarthmore College, where he also does OCD research, tells me that scrupulosity can be hard to diagnose for people without religious affiliation, since for so long it’s been thought of as an obsession with sinning and God. Secular moral scrupulosity, like what Kupers dealt with, isn’t about religion, but about being a “good” or “bad” person. In recent research he’s found that around a fifth to a quarter of people with scrupulosity were saying that they have no religious affiliation. “That’s a lot,” he says. “that's more than people in the literature seem to describe.”
One of Siev’s patients described obsessing about whether or not she felt enough empathy for people she saw suffering on TV. Other secular patients have obsessed about not recycling every single scrap of recyclable material—thinking it made them a bad citizen of the planet, someone who doesn’t care about the greater good.
With religious scrupulosity, there are often concerns about devil worship, blasphemy, hell, or offending god. Siev sees a lot of orthodox Jewish patients, likely because they deal with a lot of rules and restrictions, but it’s also common in Catholic people.
Another patient would obsess about seeing straw or grass strewn on the road there were two piece that fell on top of other and resembled a cross, and he stepped on it, that would be an unpardonable sin against the holy spirit. Another woman had to imagine people she loved with a protective halo surrounding them, to prevent them from being harmed.
OCD tends to latch onto whatever matters to you, Siev says, so this is why scrupulosity can often strike people whose religion matters a great deal to them. But this can also make it hard to design exposures for therapy. The goal isn’t to make someone violate their actual religious beliefs—making a Jewish person eat pork, for example.
Instead of forcing a kosher person to eat something unkosher, Siev would challenge them with feelings of doubt. He might have them eat something and prevent them from double or triple checking that it was definitely kosher. Or from seeking reassurance that they’re not going to hell, or that they’re a good person. “The person would take risks, but not actually do the thing that they're fearing,” he says.
Jack recently completed an in-patient program at an OCD clinic, where he joined a group of other people with scrupulosity. “It was really powerful,” he says. “To see that I was not the only one struggling with this. There was a name for what I was struggling with. There was something that I could use to explain to other people the hell that I was going through at the time.”
For one of his exposures, he went into a church, put up his middle finger and said, “Fuck you, God.”
“I had to do very blasphemous things that are completely contrary to everything that I was taught as a kid, so that was extremely difficult for me to do at the time,” he says.
But in his scrupulosity support group, he realized that the less he let scrupulosity take over, the more faithful he felt. “Every ritual resisted is an act of faith,” the group leader told him—it was a phrase he hung on to, and repeated several times to me.
“It helped me understand that listening to the therapist, rather than listening to my OCD, was going to demonstrate the faith that I was brought up with more than listening to OCD that was constantly talking in my ear,” Jack says.
For one of his exposures, he went into a church, put up his middle finger and said, “Fuck you, God.”
He says that after treatment, he felt more faithful than he did before, when he was questioning if he was a moral person for hours per day. "The only way to get something out of treatment is by taking that step in the dark,” he says. “I got to the point where I was willing to do anything that my behavioral therapist was challenging me to do. I lived through the anxiety, even though it didn't feel like I would be able to.”
Kupers started medication and cognitive behavioral therapy when he was in college. He’s been seeing his current therapist for 11 years and still takes Zoloft. When he tried to go off his medication in the spring of 2018, his OCD flared up, and so he’s back on his regular dose.
He also finds solace in meditation. He says he find a lot of similarities between the lessons he learned in CBT and his meditation practice: He notices his thoughts but doesn’t have to act on them. He can let them go, and not dwell on the devil or hell, without trying to fix the anxiety or react too much.
“When people are in the thick of it, I want them to know that I have been there, been there a lot of times, and I know how painful it feels and how it feels like it's never gonna go away,” he says.
Homosexuality OCD: "I cut off all my female friends, I stopped watching TV, I didn't want to go to the gym because everybody's there to look at each other's butts."
People with homosexuality OCD obsess that they might be gay.
In college, when Hannah began to obsess about if she was gay, she would walk around campus with her eyes down trying not to look at another woman, worried that if she did she might feel some sort of attraction or sensation. Any positive feeling towards another woman brought up her doubts: Did she want to spend her life with another woman?
“I would walk around with my eyes down, and even if I saw someone's ankle, I would—like a cat in the water—feel like I was jumping out of my skin,” she says. She went to see a therapist who wasn’t sure what to do. They tried talk therapy, but it didn’t help. Her therapist never mentioned it might be OCD.
In fact, Hannah had already been diagnosed with OCD. When she was nine years old, her mother found her on the floor of her room, crying that she didn’t want to live anymore. She had harm OCD and was scared she was going to hurt her brother with a knife. She couldn’t go anywhere near the kitchen, which she interpreted as the first step to hurting him. She went to a psychiatrist and therapist, which she says did help, and her symptoms plateaued for a bit, until college. Then the fixation on her sexuality took hold, and even though she had a diagnosis, she hadn’t heard of homosexuality OCD, or HOCD.
“It got really bad, it was just constant checking for any sort of arousal, any sort of indication, any sort of anything,” she says.”No matter where I was, no matter what I was doing.”
As treatment, she watched 'Orange Is the New Black,' sexual scenes of TV shows involving two women, and read coming-out stories.
In the meantime, she was falling in love with her boyfriend, even while constantly checking if she was gay. She went through a period where she would wake herself up from sleeping if she saw a woman in her dreams. She thought—based on her own compulsive researching—that dreaming could be a sign of sexual orientation. Any time a women would make eye contact with her in a dream, she would start kicking her legs, and often tear herself out of it. Another ritual took the form of squeezing her thighs together every time she would consider whether or not she had a gay thought.
“That's how scared I was,” she says. “I cut off all my female friends, I stopped watching my favorite TV shows, I didn't want to go to the gym because everybody's in athletic wear there, and everybody's there to look at each other's butts. And I was having breakdowns, like every day. I was treating normal thoughts as a first threat to my identity, and threats to my way of life, and threats to all kinds of things.”
Throughout it all, Hannah said it was difficult to talk about because she has no problem with gay people. It’s hard for her to explain how her OCD and this fact could co-exist. If she truly felt she was attracted to women, it wouldn’t bother her, she says. Her fear was that she would lose her relationship with the man she loved, be in a relationship she didn’t want to be in, and never be happy again.
“If that's what I wanted, I would have absolutely no problem doing that,” she says. “And really, I'm not even under the illusion that everybody is either gay or straight. I think that everybody is kind of on a spectrum, and people fall wherever. I don't even care about being gay or not being gay, I just don't want to lose my husband, I want to stay with him. I'm happy with him.”
She got married in 2012, and says the stakes got even higher. “I had my husband to lose at this point,” she says. She couldn’t bear the thought of hurting him, and upending her life, all because she couldn’t be sure that she wasn’t a lesbian. “It was just unbearable.”
The summer before she graduated from college, she went to visit him and spent her time online, looking for articles, quizzes, or anything that could tell her for certain.
To try and reassure herself, she would bring up articles she read about bisexuality to her partner, to see what his reaction would be. Or ask if he also thought a woman was beautiful; to be sure it wasn’t just her. “So then I could say, "Okay, anybody would have noticed that,” she says.
When she finally did exposure therapy, she used written scripts to enact her fears. Hers included statements like: “I've decided I'm a lesbian, and I need to tell my husband," and then she would tell her therapist how exactly it would happen, what would happen afterwards, and how her life would change.
For exposures, she also watched Orange Is the New Black, sexual scenes of TV shows involving two women, and read coming-out stories. Late-in-life coming out stories were the ones that were most triggering to her, as were stories about gender fluidity.
It was hard for her to get back into therapy, because she was worried a therapist would tell her she needed to come out of the closet. But knowing her past with OCD, she chose CBT and exposure therapy, and recently graduated as a social worker so that she can help people with OCD. She thinks, in a way, she was lucky to deal with OCD as a child because otherwise she may never have realized the homosexualty obsessions could be treated.
“Unless this is something that you have spent a lot of time with, it isn't something you would recognize,” she says.
Harm OCD: "How do I know that I won't hurt somebody?"
Harm OCD features the obsession that you might hurt or kill other people, including the ones you love.
In the midst of a stressful move from New York City to the west coast, 28-year-old Josh went on a walk to clear his head. He passed by either a school or playground—he doesn’t remember exactly—and had a thought about physically hurting one of the people he saw.
“I was like, Whoa! What the fuck? I don't think like that. That's really scary,” he remembers. But suddenly, he did think like that. He would plead with himself: “Don’t have violent thoughts today,” and then they would inevitably emerge—about hurting his family, or committing sexually violent acts.
Josh finished his move to LA in 2014 and met his girlfriend around the same time. He was terrified to tell her about his intrusive thoughts. “I definitely hid it from everybody,” he says. He vaguely shared that he was struggling with his parents, but didn’t get into specifics. “I have a pretty open relationship with my parents, but this pushed the boundaries of that. I remember sitting down with my mom at dinner and putting my head on the table, starting to cry, saying, ‘I don't know what's going on.’”
He didn’t know if his thoughts were urges—did he really want to hurt people? “Throughout this entire process, I've never thought, ‘I'm going to harm somebody,’” he tells me. ”It was more, ‘How do I know that I won't do that? How do I know that by having these thoughts, these aren't an implication of some desire that is just developing now?’”
Josh stopped feeling sure if he had really hurt someone or not. If he walked by someone on the street, his thoughts would tell him: You just hurt that person. He’d try to reason back: No, I didn’t. “But my OCD would be like, Yes, you did,” Josh says.
I remember sitting down with my mom and starting to cry, saying, ‘I don't know what's going on.’”
He started to keep track of everything he did, creating 30 to 40 notes on his phone per day. It took up hours of his time. When the inner voices started asking: How do I know that I didn’t kill somebody, what if I did kill somebody— he could check.
Even then, it didn’t always work. His OCD could make up stories like this: Two months ago you went somewhere south and killed somebody and threw their body off the bridge and you're just remembering it now.
“My mind was creating this story,” he says. “Then, when I started to think about it, it was like I was remembering details of this fictional story, and that was evidence that this actually happened.”
His thoughts would also tell him he had something illegal in his house, or that a murder weapon was hidden somewhere. The doubt would become overwhelming, and he’d have to go through all of his stuff to check.
Josh saw two therapists, and both told him that everyone had bad thoughts sometimes and it was normal, or that he had generalized anxiety. A few months later, Josh read an article online about someone else with harm OCD and realized that’s what he had.
Finding out that there were others like him was a huge relief. “When I learned about OCD, that this is a very documented thing, and lots of people deal with this, I thought, thank god I'm not this pariah,” he says.
He found a therapist who specialized in OCD and began exposure therapy to face his fears, like public bathrooms. In the past, Josh would think that there was a child in the bathroom and that he had hurt them. To be sure, he’d have to check each stall to make sure. For one of his exposures, his therapist had Josh stand in a public bathroom alone for 15 minutes without any checking.
Now several years later, Josh has a handle on his obsessions, and he’s coming to terms with what he went through. He can even laugh about it. He tells me about the time that he and his girlfriend were making guacamole, and she jokingly said, “Test the guacamole to make sure it’s not poisonous.”
Josh laughs as he tells these stories—he can find humor in it now that he's in therapy and his symptoms are more manageable.
That launched a poisoning obsession, and Josh began to worry that he had poisoned their food. To prove he hadn’t poisoned it, he ate all of the guacamole. When his girlfriend came back, she was baffled about why he had devoured it all. “It was a lot of guacamole,” he says. “It was very unpleasant.”
Josh laughs as he tells me these stories over the phone, and I hear his girlfriend laughing in the background. He can find humor in it now that he’s in therapy and his symptoms are more manageable. He says you have to find a way to laugh at what’s happening to you—while recognizing this is a serious condition. But when other people joke and call each other OCD in fun, it can still rub him the wrong way.
“OCD isn't an adjective and this isn't a quirk,” he says. “This is a really debilitating disorder that causes a huge amount of discomfort. If I were to go back five years from now and tell myself, You're going to start worrying about this, I would say, What are you talking about? No I'm not. That's ridiculous. But it's like there’s a window in your brain and somebody punched a hole in it, and it's a black hole that sucks everything in. All of a sudden it's so overwhelming.”
This article originally appeared on VICE US.