You’ve probably seen it before: the TV character dramatically washing their hands or painstakingly straightening every object on their desk. You’ve probably heard people on social media saying, “I’m sooo OCD” when they really just mean that they’re organized or, “I let my intrusive thoughts win” as a substitute for, “I did something impulsive!” So, if you don’t know someone with OCD in real life, you might think that OCD is just extreme organization or cleanliness: a personality quirk that doesn’t really cause harm.
However, real-life obsessive-compulsive disorder is often very different from these misleading depictions, and they can be harmful to real people who have the disorder. Obsessive-compulsive disorder is a mental health disorder that affects about 1.2 percent of people in the U.S.. It is characterized by disturbing, upsetting fears or worries (obsessions) and attempts to gain relief from these thoughts (compulsions).
I have OCD myself, but for me, it doesn’t look like the benign organizing or cleaning that I see on TV. To combat these misrepresentations, I decided to reach out to other people with OCD to gain more perspectives on lived experiences of the disorder. I intentionally sought participants with OCD that does not center around organization or handwashing in an effort to represent subtypes of OCD that are less commonly known.
While people with OCD experience different obsessions and compulsions that change over time, individuals often have prominent recurring themes. I interviewed three college students with various types of OCD. College third-year Freddie Rukenbrod’s obsessions have primarily centered around being physically attacked by others, resulting in compulsion attempts to protect herself from attack. Vassar College fourth-year Anna Conway’s OCD tends to fixate more on the possibility of being poisoned and involves taking extreme precautions to avoid anything that could be construed as poisonous. Meanwhile, Muhlenberg College fourth-year Julia Lennon’s obsessions revolve around herself inadvertently harming others, leading her to perform compulsions to prevent this supposed harm.
In a series of qualitative interviews with people with OCD in a journal called Deviant Behavior, Dana Fennell and Micheal Boyd found many respondents believe that OCD is portrayed in a more humorous light than other mental illnesses in the media. Since OCD is so poorly understood, all of the interviewees said that they were confused about their obsessions for a long time before they realized that they had OCD. Rukenbrod thought her obsessions were normal and that everyone experienced significantly intrusive and disruptive fears until she described her obsessions to her mother.
“I had thought […] everyone experiences this,” she said. “Everyone refuses to get out of bed at night because they’re going to get serial killed in the middle of night if they do.”
Lennon was 16 when she began searching her symptoms online and first considered that she might have OCD. Meanwhile, Conway began to have suspicions when she read Turtles All the Way Down at the age of 13 and was struck by how much she identified with the protagonist, who has OCD. While all three of them arrived at the conclusion that they might have OCD in different ways, they all struggled with the effects of the disorder for quite some time before seeking a diagnosis.
Both Lennon and Rukenbrod discussed how the obsessions can become so all-consuming that it is impossible to ignore them. The fear of the obsession coming true commands all of your attention, even sometimes drowning out the fear of behaving “strangely” in public.
“You were willing to have a mental breakdown in public because it’s more important that you do your compulsions because you really believe…when they tell you something is going to happen unless you do [them],” Lennon explained.
Rukenbrod echoed this, explaining seemingly life-threatening obsessions. In seventh grade, she was terrified that she was being stalked by a killer clown, and she struggled to focus on anything else.
“My grades were bad. I didn’t care about math. There’s a clown! Priorities! It just kind of destroyed my life,” she said.
All of the interviewees reiterated how misunderstood OCD is by the general public, and how harmful this can be to people with OCD, particularly people who have not yet realized that they have it. Conway highlighted the individual nature of the disorder and cautioned against viewing people with OCD as a monolith who all have the same obsessions and are affected by the disorder in the same ways.
“Just because you know one person’s experience doesn’t mean you know everybody’s,” she said.
The prevalent misuse of the phrase “intrusive thoughts,” particularly on social media, is often particularly frustrating for people with OCD. Using the phrase to refer to lighthearted, silly actions trivializes the extremely disturbing intrusive thoughts that people with OCD experience.
“Don’t make jokes about it. Don’t say that you have intrusive thoughts,” Rukenbrod said. “My intrusive thoughts are to [severely harm] my brother. Your intrusive thought is to buy a cardigan.”
“I don’t think I’ve seen a lot of characters that have OCD like mine ever,” Rukenbrod said. Lennon agreed, adding that except for one episode of Grey’s Anatomy, she had not seen very much OCD representation.
However, positive representation can make a huge difference, as it did for Conway.
“I read Turtles All the Way Down when I was in a really bad peak of believing that I was sick [because of OCD], and it really opened my eyes,” she said.
Lennon, who aspires to be an author, hopes to provide similarly affirming representation to others in her own writing about OCD.
“[OCD] has also given me a passion,” she said. “Half of my writing is about OCD, and it helps me feel a drive.”
If you know someone with OCD and want to support them but are not sure how, doing so is not as complicated as it may seem. Conway appreciated friends who have been empathetic and non-judgmental about her obsessions.
“[What helps is] just not making me feel very silly,” she said. “I’ve had people do laundry with me who have been like, ‘Yeah, it’s freaky to touch those things sometimes, yeah, I get it.’”
Lennon’s answer was very similar, highlighting the difference that therapy can make in treating OCD.
“Being patient and being supportive when it comes to therapy [is helpful],” she said. “Just being open-minded and willing to hear about my experience with it without judgment.”
The gold standard therapeutic approach to OCD is known as Exposure and Response Prevention therapy, or ERP. The approach involves gradually exposing patients to triggers of their obsession(s), and then delaying or avoiding performing the compulsion. Eventually, many people are able to experience relief from the obsessive-compulsive loop.
Rukenbrod explained that when she was first learning to cope with her OCD, her mother was helpful because she adhered to one of the most important and most complicated principles of ERP: do not fight the compulsions.
“My mom never gave in to my fixations,” Rukenbrod recalled. “If I was super worried that something was going to happen, she was like, ‘That could happen, but that’s okay.’ That was terrible in the moment … but afterwards, I realized that … I can’t live in chronic fear, and I cannot live a lie, which is that bad things don’t ever happen. So that [acceptance of the uncertainty] was very helpful.”
The strategy that Rukenbrod’s mother used is similar to ERP because it involved exposing Rukenbrod to the obsessions that distressed her and learning to sit in the uncertainty that they may be true. While this may seem counterintuitive, accepting the uncertainty allows people with OCD freedom from attempting to manufacture certainty through their compulsions.
Some people with OCD, myself and Lennon included, consider it to be a part of their identity.
“I think of my OCD, who I’ve named Chelsea, as … a blessing more than a curse,” Lennon said. “It’s helped [make me] into who I am today, and I feel like it’s just made me so much stronger and more capable of dealing with demons.”
On the other hand, both Conway and Rukenbrod stated that they used to view OCD as a part of their identity, but no longer saw it that way.
“I have gotten better at separating my [obsessions] from myself,” Conway explained. “Just because I am afraid of these things does not mean it’s permanent. … Just like my seasonal allergies wouldn’t necessarily be a part of my identity.”
Rukenbrod agreed, emphasizing that medication has greatly helped her manage her symptoms, so she does not see OCD as part of her identity.
“It’s a big part of my childhood. [OCD] was who I am, but not anymore,” Rukenbrod said.
OCD is not a monolith. The variety of perspectives on OCD and identity illustrates the vastly different experiences and viewpoints that people with OCD have.
When I asked what she wishes more people understood about OCD, Lennon laughed wryly.
“Um, everything? It is so … complex and so varied in every individual,” she said. “Maybe if people understood this, a lot more people would also understand that maybe they struggle with OCD, and that could give them … a starting place on where to get help.”
