Obsessive–compulsive disorder, which affects 3.8% of young Americans, is often misrepresented throughout our culture, from movies that show repetitive handwashing as the end–all be–all of compulsions to that one girl in your class who swears she’s “so OCD” because she likes her room clean. Today, a new generation of therapists and creators alike are flocking to TikTok and Instagram to call attention to what really goes on in the brain of someone who has OCD, while also showing audiences that those pesky four–hour rumination sessions and perfectionist tendencies have a clinical diagnosis. Significantly, they extoll the virtues of exposure and response prevention therapy (ERP), a powerful tool for new and returning patients.
The word “influencer” often brings to mind lifestyle hacks or fashion trends, but rarely someone “influencing” us to learn more about mental disorders. But these young therapists and content creators are breaking new ground by plugging resources and challenging traditional dialogues about OCD.
But there is always a danger to social media health advice; OCD looks different for everyone, with each patient suffering from different anxieties and associated symptoms. Self–diagnosis is not a bad thing in itself, but without seeing a medical professional to talk through symptoms, you risk receiving ineffective and potentially harmful advice online. Additionally, many OCD influencers tend to commodify their online presence by selling courses, promoting books, and plugging group therapy sessions. This risks bringing OCD treatment further under the umbrella of capitalism, predatorily marketing to an already at–risk group.
Despite its flaws, OCD influencing has managed to bring more attention to the illness and common misconceptions that surround it. OCD manifests itself in “themes”—through–lines that someone’s mind is pre–occupied with, around which obsessions, intrusive thoughts, and fears coalesce. The work of OCD influencers can help bring attention to themes that are not generally known by the public. From explaining what “Pure O” OCD is, which revolves around intrusive thoughts without the compulsive behaviors typically linked to them, to bringing attention to less discussed obsessional themes, like harm and pedophilia, influencers are broadening public discourse around mental health, reaching people with messaging that is funny, scary, and, above all, informational.
Just like someone’s first queer awakening might stem back to a video or movie, more and more people are piecing together what has been going on in their minds by watching videos from OCD influencers. And for those of us with OCD, knowing that other people are out there building community around shared struggle is empowering.
Like many, Nicole Rafiee’s OCD journey began later in life, long after the first onset of symptoms. Having struggled with obsessions and compulsive behaviors for most of her life, she was finally diagnosed in her early twenties, after she’d already developed a vast Youtube and social media following. But like many, she was given ill–fitting and ineffective treatment. When the pandemic began, she experienced an uptick in symptoms like catastrophic thinking.
“I was just a shell of a person … I had this massive theme of a fear of the end of the world,” Rafiee says. “And so it was that, and feeling like I caused the pandemic somehow. And then my mom got cancer, and then somehow I felt responsible for that as well.”
Rafiee’s themes include not only catastrophic thinking, but also the health and well–being of those around her—but what does this actually look like in the brain?
For a person with OCD, everything revolves around a feared outcome in some situation, and the anxiety surrounding that fear builds until it reaches a peak. To alleviate this overwhelming anxiety, a person performs a compulsion, which only works temporarily. No matter how safe you feel after completing a compulsion, the root fear always rears its ugly head. Many times, a compulsion is an irrational action that has no actual effect on preventing the feared outcome.
“Exposures” are exercises designed to trigger your anxiety about the feared outcome. Planned exposures are the crucible of ERP, but the process is more like a marathon than a sprint. It is important to start slow—otherwise, the anxiety is overwhelming and the patient cannot even try to deal with preventing unwanted compulsions. It is important to realize that not all compulsions are visible; many of them are mental. A good example is rumination: an extended internal dialogue with OCD, seeking to find certainty where uncertainty dwells, safety where something is scary.
Response prevention can look very different depending on the exposure, but, as should be obvious by now, this is a complicated and often arduous process. Most of the treatment occurs outside of sessions, putting the onus on the patient to follow their treatment plan. It doesn’t help that many of the themes that OCD latches onto are highly personal and can be deeply intertwined with someone’s self–perception. From sexuality to parenthood to health, OCD can severely hamper someone’s ability to function. Unfortunately, many remain undiagnosed and untreated, and even if treatment is pursued, success is hardly a guarantee. ERP is an infamously exhausting process.
At the beginning of this process, Rafiee found herself asking, “Am I gonna feel this way forever?” Thankfully, ERP worked wonders for her, and she shares parts of her journey on different social media platforms so that others can realize there’s a way out of what seems like an insurmountable abyss. Having recently “graduated” from her ERP program, she feels that she now has the tools necessary to fight back against OCD.
But it hasn’t always been like this. “I think if I had somebody to watch when I was younger who kind of was open and honest about their experience with OCD, I probably would have gotten diagnosed a lot sooner. I probably would have sought out a diagnosis and gotten help,” says Rafiee. “I really felt like I was the worst person alive for having the thoughts that I was having and doing the things I was doing just to get relief and reassurance and to fulfill my compulsions.”
This story is all too common among those with OCD. Gen Z reports that the strongest barrier to seeking a diagnosis is shame, and a study of adults found an average delay of seven years between symptom onset and a diagnosis. Starting and successfully engaging in treatment is a challenge of its own, as mental health care remains exorbitantly expensive and inaccessible for many.
Accounting for many people’s lack of knowledge about what OCD is and how it works is complex, but much of it stems from cultural misconceptions in the media. For many, associations with the disorder are primarily bound up in hand–washing or excessive cleanliness. Juliet Gustafson, an ERP therapist and content creator, hopes to push back on these inaccurate and harmful stereotypes by making engaging, relatable, and humorous content.
“One thing that is clear is that mostly when OCD is depicted on screen, it’s depicted in a very narrow, stereotypical way of someone who’s afraid of germs, or someone who’s like a neat freak,” Gustafson says. “And we know that that’s, like, a sliver of the pie of OCD.”
As should be clear by now, OCD is less about order, cleanliness, and personality quirks and more about a constellation of deeply personal fears. These fears impact one’s ability to function and warp not only one’s self–perception but also their engagement with others and with reality itself.
For Dr. Laura Johnson, an artist, mother, scientist, and OCD influencer, her diagnosis was delayed due to harmful stereotypes surrounding the illness. As a university student, Johnson dealt with contamination–related fears, the often irrational anxiety that something is unclean or infectious. In her case, though, she was actually unable to clean, unlike the stereotypical OCD subject, because doing so would cause her fears to skyrocket. Likewise, as a researcher in virology, Johnson was working closely with highly infectious diseases, which seems to butt heads with classic stereotypes. But her OCD became too severe to continue working, especially after she became pregnant. Her fears now took the form of perinatal and parenting OCD, causing her immense anxiety over the health and well–being of her children.
While trying to deal with constant intrusive thoughts about violence and harm coming to her children, she became overwhelmed by her obsessions; her OCD told her that she had to perform compulsions to make sure they were okay.
“[I] didn’t trust the baby monitor, didn’t trust my senses, same with driving, it just permeates into every area of your life … it was everything I valued, everything I loved or cared about,” Johnson says.
Eventually, she was able to get ERP treatment, which went a long way towards allowing her to accept the uncertainty around her children’s safety. Now, using her artistic skills, she draws attention to the very stereotypes that harmed her in the past. She also raises awareness and funds for groups like OCD Action, which played a pivotal role in getting her the help she needed.
Johnson makes engaging content “because it’s still so misunderstood, and I had to wait over two decades to get treatment … psychotherapists, medical professionals were missing it and couldn’t pick up on my symptoms.”
Her account OCD Doodles posts infographics in a cute, calming style, but the illustrations are in no way cute once one realizes the gravity of what they depict. One recent post opens with the following message: “2 minutes of your time could save someone 2 decades of suffering.” The illustrations attached in the video below go on to dispel myths about what OCD actually is.
In addition to making content that dispels myths, influencers like Gustafson are making content about themes that are harder to speak about, bringing awareness to fears that are shrouded in silence and shame. This can include fears surrounding sexual preferences and behaviors—a common one is pedophilia OCD, the fear that you might sexually harm children or be attracted to them. Unwanted thoughts about this theme can be deeply troubling and confusing for those who don’t understand what OCD is. The fear is so strong that many don’t ever go near children and will not have kids; they might even think they are the worst person in the world (something common across themes). A recent post from Gustafson is captioned, “On this account we de–stigmatize taboo intrusive thoughts.” Themes surrounding sexuality and harm—whether it’s the fear that you will perpetrate harm or be a victim of it—are rarely talked about due to the person’s fear of being misunderstood.
While this content can spread awareness about the condition, making that content is not always easy for those with OCD—in many ways, it can function like an exposure: An event which triggers fears, causes great anxiety, and makes obsessive thoughts and compulsive behaviors more likely.
“The number of times I’ve woken up and wanted to delete OCD Doodles because I’ve been frightened of causing harm to other people, fear of being misunderstood, fear of being judged. And so just having the account is an exposure in some ways, but like with any exposure, the more you expose to it, the more that you do it, the easier it gets,” Johnson says.
And the impact has been tremendous. She gets messages all the time saying, “Thank you so much for posting that. You’ve made me recognize that I think I might be dealing with OCD.”
Rafiee can relate. “It’s genuinely really crazy that it’s almost every single day that I get a message like that, and it’s the most heartwarming thing, [but it’s] also, completely heartbreaking. Because I’m like, damn, I really wish this many people didn’t have OCD,” says Rafiee. But she is also happy that her content has made an impact—“Like, just a silly little video of me talking about it, or doing an ad read, talking about my OCD experience, or making a stupid TikTok about it, raises so much awareness,” Rafiee says.
For Rafiee, making content about her experiences hasn’t always been easy. One of her themes revolves around pregnancy—specifically, the fear that she might be pregnant without knowing it. This fear was exacerbated by the fact that pregnancies can sometimes be hard to identify, and shows like “I Didn’t Know I was Pregnant” that featured cryptic or undetectable pregnancies fed into her OCD. Anything is possible, no matter how unlikely, to the OCD brain. And speaking out about these fears feels unsafe and scary, as if you’re admitting a secret that others can use against you.
“I remember one time I went live on Instagram, and somebody just kept spamming the chat with pregnant emojis,” Raifee says. “And I was like, okay, but … I didn’t die from any of those things, and I didn’t get pregnant from any of those things, and … I lived and persisted.”
Johnson has also received some ill–intentioned messages from viewers. She describes how she once got an “awful email” from someone accusing her of being a selfish, terrible mother who was doing harm to her children. For someone with maternal OCD and harm OCD, this is probably the most triggering thing that can be said. But those with OCD are not passive bystanders to their own predicament; like many, Johnson turned this bad experience into a positive one, displaying remarkable resilience.
“I actually kept that email as a script to kind of read, because it was like … you know, that’s not nice, but thanks,” says Johnson.
Scripts are a common way to carry out planned exposures. You write down a triggering scenario to read out loud to yourself, or even record and listen back to. It is a way of intentionally creating triggering situations and building skills that can be used when the exposures are more intense and unplanned.
Other creators have worked scripts into their content in various forms. Gustafson makes content about not only what intrusive thoughts might look like, for example, while cooking (“Cut off your finger! Your chicken definitely has salmonella”), but she also used to run a podcast with Peter Cannon called Intrusive Plots, which picks apart misrepresentations of OCD in film and television. The final episode featured Cannon’s film Exposure, which functions as a live–action OCD script—it depicts a man convinced he is under threat of being poisoned, resulting in his wife making him get treatment through exposure therapy.
In many ways, the efforts made by people like Gustafson, Cannon, Rafiee, and Johnson have worked to dispel the stigmas surrounding OCD. Since Street last interviewed her one year ago, Rafiee believes things have slightly improved.
“I feel like more and more people are more openly talking about their OCD on the internet, at least from my experience, because being on the internet for as long as I have been, there hasn’t been that much representation,” Rafiee says.
By hosting a recent podcast with comedian Howie Mandel, she hoped to spread awareness with a celebrity who has long been one of the only famous voices speaking out about his experience with OCD. Even so, she notes that there has been a contemporaneous rise of people turning mental illness into content and making light of those actively going through episodes—evidence that there is still much work to be done.
Not all influencing is good influencing, however. Aliza Shapiro, a content creator and therapist specializing in anxiety, depression, and OCD, explains, “When we have creators of any kind giving advice about real mental health challenges without having the proper background, we run the risk of oversimplifying disorders that are incredibly complex and nuanced. Misinformation spreads fast, and people wind up misdiagnosing themselves, misunderstanding others who actually have disorders, and giving ‘guidance’ that actually makes symptoms worse.”
This is especially true of OCD, which can often be exacerbated by the wrong type of clinical treatment. Talk therapy alone is not the answer; one cannot simply reason with the disorder. Similarly, online content is not a replacement for ERP, and never can be. Gustafson says that the goal of her content is not to treat OCD, but to help people recognize potential symptoms in their own lives and seek help from a qualified therapist. The true goal is to get people connected to those who can actually help, including organizations like the International Obsessive Compulsive Disorder Foundation.
All of the influencers Street spoke with have disclaimers on their pages stating precisely what their content is not meant to be, acknowledging the inherent limits of using social media to spread awareness about mental health.
But not everyone on social media has patients’ best interests in mind. There are those whom Johnson dubs “charlatans,” unqualified “coaches” who market their services to those desperate for help. They often promise easy cures and secrets to treat OCD—unfortunately, no such hack exists.
Johnson had a very negative experience with one of these coaches, which is part of the reason that she is so careful with her own content, emphasizing that it is only signposting and sharing helpful information, not treatment. She recounts the extraordinarily dangerous impacts of not seeing a qualified professional.
“I was doing exposures without any kind of safety around it … I was going out doing exposures and getting back in my car and driving through red lights, and because I was so stressed, at one point, I had a migraine driving, and my vision was like tunnel vision,” Johnson recounts. “I couldn't see the lanes on either side of me. I had my child in the backseat, and there was just no safety framework around it.”
Johnson warns against blindly trusting anyone you see online, emphasizing that any OCD coach worth their salt will admit their limitations upfront, making clear that they are not a therapist. Gustafson sees the combination of weak health care infrastructure, especially in the U.S., and the vulnerability of those struggling with OCD as key factors driving the rise of predatory marketing.
“There’s lots of money to be made with people who are struggling and people who are in the state of, ‘I’ll do anything to feel better’… [there’s] a very big access barrier for a lot of people, with insurance and with access to mental health treatment, as well as then underneath that, with access to specialty mental health treatment for OCD.”
The access barrier to mental health care in the U.S. is no joke—in 2021, around two–thirds of those with diagnosed mental conditions were unable to access treatment. This gap is even starker for those seeking ERP therapy, a highly specialized treatment that many therapists are not well–versed in.
In a healthcare landscape fraught with uncertainty and high barriers to entry, social media can be hit or miss when it comes to mental health advice.
While these influencers have done a lot to help those with OCD, the advice they provide is more broadly applicable. Discomfort in trying certain things is natural, and uncertainty will always be lurking in the rearview mirror. Even those who don’t suffer from OCD can learn valuable lessons from ERP therapy. OCD influencers not only shed light on a highly stigmatized and misrepresented disorder but also share tools and strategies that are broadly helpful.
Consider Johnson’s resilience in repurposing a cruel email, or Rafiee’s experiences being sent pregnancy emojis while struggling with pregnancy–related OCD. Those who undergo ERP are able to deal with uncomfortable situations by embracing the lack of certainty that undergirds all of human existence. Sometimes, anxiety is productive, insofar as it spurs us to act, prepare, and do our best. But in many cases, it causes one to ruminate on the past or future, even when there is no hope of changing either.
OCD influencers approach these limitations with a spirit of humor and self–reflection that reminds me of Charlie Chaplin’s dictum: “Life is a tragedy when seen in close–up, but a comedy in long shot.” The very irrationality of intrusive thoughts and the arbitrary nature of compulsions is thrown into sharp relief by online content that makes us laugh and reevaluate some of the far–fetched things OCD makes us believe.
