The detrimental impacts of OCD misinformation

Jazzy Colbert, Reporter

When people who, like myself, live with obsessive-compulsive disorder see inaccurate media coverage painting OCD as being either desirable or dangerous, such as how the New York Post, the New York Times and Psychology Today have done in the past three months alone, I fear for my community, which is pleading for the public to understand that our intrusive thoughts do not define us.

When people are inadvertently or intentionally ignorant about what OCD actually is, those spreading these myths often not only invalidate patients’ lived experiences, but can also hinder our progress in recovery, our ability to accomplish goals, and our motivation to lead lives we enjoy. 

According to the International OCD Foundation’s “What is OCD?” section, obsessive-compulsive disorder is defined as the occurrence of a person getting caught in a cycle of obsessions and compulsions to a degree that is extremely time-consuming (takes up more than an hour a day), causes intense distress or interferes with activities that the person values.

“Obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings,” the IOCDF said. “Compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease distress.” 

These symptoms make people with OCD anxious because they are being bombarded with thoughts that are not aligned with their values. These thoughts are defined as ego-dystonic (contrary to who individuals are) and not ego-syntonic (indicative of actions these people want to do). 

Out of shame for these symptoms and desperation to get rid of them, people with OCD often perform compulsions, ranging from mental, such as praying when they fear that they have sinned, to the more outwardly visible, avoiding cooking because of a fear of stabbing someone with a kitchen knife. These unhealthy coping mechanisms only reinforce the OCD cycle and prove to the brain chemically that the thoughts were correct to fear, therefore leading to worsened symptoms down the line.

According to a study by Marie Ociskova in Activitas Nervosa Superior Rediviva entitled “Obsessive-compulsive disorder and stigmatization,” whenever people in the surrounding environment of OCD patients do not understand the nature of OCD symptoms, it makes individuals affected by the disorder more likely to isolate themselves.

This kind of stigma is exemplified by John Mac Ghlionn’s article for the New York Post entitled, “OCD is increasingly a commonality among extremist behaviors: researchers.” 

Ghlionn claimed that some of the thoughts involved in OCD, such as wanting to harm yourself or others, can be radical enough that they escalate into acts of violence. 

Rev. Katie O’Dunne, founder of Faith & Mental Health Integrative Services and lead advocate for the IOCDF, said in a Zoom interview, “If I would have read this article, while kind of in the throws of my own intrusive thoughts… and saw someone say folks with OCD, if it conflated it with extremism, I very much would have believed that I was dangerous, that it was irresponsible for me to seek treatment, that I didn’t deserve to continue working as a chaplain.”

O’Dunne works as a clinical chaplain alongside care teams of people with moral and religious scrupulosity OCD (fears of being immoral and of sinning, respectively) to help them navigate what in their life is consistent with their faith and what OCD is affecting. She said that OCD latches onto morality and faith for these individuals because those are the things that are most important to them. 

O’Dunne said, “The biggest questions that I get are, ‘What if this is actually true? What if I’m actually a horrible person?’ I actually saw with clients that I was working with [take] huge steps back after this article because we had been doing so much work to say that these thoughts are just thoughts, and then they saw an article that said, ‘Well these thoughts are not just thoughts. You could actually act on these thoughts.’”

Most of the general population, even those without OCD, will experience intrusive thoughts at some point in their life, but OCD amplifies these symptoms to the point that they get more “stuck” than a neurotypical person’s thoughts. 

In one of my OCD episodes in particular, I spent four hours ruminating about whether I had ever been a bad friend to anyone I know, going back to my preschool years. When people with OCD follow these “thought spirals,” false memory OCD can occur, where the disorder twists what has actually happened in the past and makes you question who you are at your core. 

Esther Fernandez, who has OCD and is a content creator for the Made of Millions Foundation, said in a Zoom interview, “The tricky thing about OCD is, even though you might logically know, ‘I don’t actually want to cause harm to someone,’ the reason why you get stuck in these compulsive cycles is because of… that doubt and that fear.”

Uma R. Chatterjee, who is a mental health peer specialist, IOCDF advocate, a neuroscientist studying OCD and is living with OCD, said in a Zoom interview that there is so much work to be done to find out exactly how OCD works in the brain. We do know that one of the many areas that the disorder affects is the hippocampus, which is known for memory. Chatterjee said it has been found in several studies that people with OCD have hippocampal shrinkage.

The World Health Organization lists OCD as one of the top 10 most handicapping conditions, mental or physical, by lost income and decreased quality of life. 

“When you are spreading this type of misinformation, and you’re accusing people that they are their biggest fears…people with OCD are [often] very suicidal, and they do self-harm,” Fernandez said. “They struggle with addiction, keeping themselves at home, cutting off relationships. This is not like, ‘Oh, they might get their feelings a little bit hurt.’ If you already know that someone is so afraid of their thoughts, to the point where they can’t even function, [how is it] okay to be like, ‘You’re a bad person.’” 

Since I have been active in the online OCD community since 2017, I have seen skeptics eventually become receptive to learning about the disorder from myself and my OCD-warrior friends. I often wonder how so much misinformation about us can still be the loudest voice in the media when the journalists and content creators who are perpetuating these myths don’t bother to research more. 

David “Eli” Israelian, a co-founder of the mental health organization Painted Brain and who has OCD, said in a Zoom interview, “It’s clickbait. You don’t understand the disorder, and, in your mind, as a journalist, you’re going to connect that with something that’s provocative to make your point. I look at it as exploiting a weak population, tying it in with a very dangerous, violent one as a formula to successful trafficking of users.”

Exposure Response Prevention is the leading treatment for OCD. It consists of facing fears in order for people with the disorder to accept uncertainty surrounding their intrusive thoughts and not do compulsions. Unfortunately, according to the IOCDF, it can take up to 14-17 years from the onset of symptoms for a person to get diagnosed and begin treatment for OCD. 

Even though I have been in therapy since age 7, and have experienced OCD symptoms since age 4, I was not diagnosed until I was 17 years old. I was labeled a perfectionist by my childhood therapist, and a gifted kid by my elementary school teachers. 

I am far from alone in this experience. According to a study by Paul M. Spengler and David M. Jacobi published in the Journal of Mental Health Counseling, OCD affects 2.5% of the general population. Barriers to treatment for people with OCD are often caused by a lack of client reporting, an inaccurate assumption that OCD is rare, clinicians’ mislabeling due to patients’ comorbidities and a lack of discussion of OCD in counseling literature. 

Throughout my recovery journey, I have seen people with whom I confide about my OCD be accepting of my symptoms of contamination fears and checking compulsions more easily than my harm and moral scrupulosity OCD. 

Fernandez said that through her work for Made of Millions, she has heard stories of people with socially-taboo OCD themes opening up about their OCD to people who are not informed about what OCD actually is, and they were reported or penalized for sharing.

“Everyone’s like, I’m so OCD,” Fernandez said. “And you’re like, ‘Oh, what are your intrusive thoughts about? Is it about harming people? Is it about your sinning against God? Are you doing this?’ And then like, ‘Don’t share that.’ They romanticize us and sensationalize. They’re like, ‘We just want the funny, like, rearranging your pencils.’ They don’t actually care about learning what OCD is actually about.” 

On the other hand, when people express to clinicians that they feel the crippling need to perform more socially-accepted compulsions like cleaning or organizing, psychologists or psychiatrists who do not know the extent of how debilitating OCD is, often quickly dismiss these behaviors as normal. 

This misrepresentation stems from the popular perception of OCD, as exemplified in Maia Szalavitz’s article in the New York Times entitled, “I Don’t Mind if You Say You Have ‘a Little O.C.D.’” 

Szalavitz said, “I don’t mind if you say you have a bit of O.C.D. or A.D.H.D. — as long as you know what that really means and aren’t just relying on stereotypes. The more we recognize that we all have traits that at the extremes can be disabling, the more compassionate we will be and the more we will be able to benefit from everyone’s talents.” 
I would argue that when people claim they have a little of any disorder, instead of saying they have symptoms that are not at a diagnosable level, it does more harm than good to those who have been diagnosed or are not able to be diagnosed because clinicians play into the popular glamorization of mental illness.

O’Dunne said, “When we’re saying we have a little OCD, we’re minimizing that entire disorder, we’re putting it in a box. We also prevent folks from getting treatment because sometimes they’ll start to minimize their symptoms. They’ll say, ‘Wait, if everybody says they have a little OCD, I guess it’s OK that I’m doing these compulsions 20 hours a day.’ Ultimately, that’s what makes folks get sicker as opposed to actually reaching out to get treatment that can help them reclaim their lives.”

On the topic of OCD being colloquially misused as an adjective, in the phrase “I’m a little OCD,” Chatterjee said the word “no” followed by a laugh and further elaboration. 

“I’m a cancer survivor, and I’ve never heard anybody say I’m a little cancer. I’m a little cancer doesn’t even make phonetic sense. You have a diagnosis or you do not have a diagnosis. There is not a little, so that still perpetuates the stigma that this is some sort of choice. You’re not being obsessive-compulsive disorder,” Chatterjee said.

Misinformation about OCD is hard to escape, from the TikTok trend where creators announce that they’re letting their intrusive thoughts win by buying or eating something they should not–the joke being they wanted to, secretly, all along–to red and green apparel at Target plastered with the phrase “Obsessive Christmas Disorder.” 

Fernandez said, “They have this misconception that people’s intrusive thoughts are like secret, suppressed, hidden desires. Which couldn’t be any further from the truth. So again, it’s just adding to the misconception of what OCD actually is. The moment you want to act on a thought is the moment it’s not an intrusive thought, right?”

O’Dunne said that seeing an “obsessive Christmas disorder” shirt is especially harmful to people who have spent the last 10 years of their lives kept from leaving their house because they were perceived as being defined by OCD. 

“You finally go out for the first time and you see that in Target,” O’Dunne said. “That is a knife to the gut that can absolutely destroy someone’s recovery and destroy someone’s life.”

OCD cost me years of my life when I would have been in school, working and forming meaningful relationships. When I read the article written by Michael Alcee in Psychology Today entitled, “OCD as a Superpower: Here’s how to harness it and heal yourself,” I wondered if I was alone in thinking that OCD is not something that has aspects that can be cherry-picked to improve compassion and empathy, as the article claims is possible. 

Sure, I am grateful for the community I have found by sharing my struggles with OCD, but the disorder itself is not a gift to me. Even in cases when a compulsion happens to allow me to clean something more thoroughly than the average person or notice something helpful while checking an object, I still do not think those compulsions are beneficial because I ritualize whenever I am consumed by anxiety.

“I think it depends on the person but I think most people would agree, we don’t like doing compulsive behaviors, that’s the point of treatment,” Fernandez said. “I don’t want to do compulsive behaviors. I want to enjoy my life and I want to be with friends and family and I don’t want to be stuck in my head. So yeah, personally, I wouldn’t really say it’s like a superpower.”

After O’Dunne and others from the OCD community spoke out, Alcee has since apologized and published an updated article. 

O’Dunne said, “I used to teach a lot of students work around activism, when to call in versus call out, so in other words, when to tell folks, ‘Hey I’m gonna give you a little more information on this, let’s work on this together,’ versus saying, ‘That’s wrong stop, doing that.’ I think both can exist within this conversation.” 

The IOCDF has started an Advocate Program where people passionate about OCD awareness can become grassroots advocates and eventually even lead advocates by participating in events and posting content online to dispel myths about the disorder. These activists use the hashtag #NotAnAdjective on social media, and they get involved with the IOCDF’s other volunteer efforts and attend their conferences. 

Chatterjee said, “It’s not the responsibility of someone with OCD to be able to read through all of that and then decide that it’s not true. Because, frankly, it’s not their job to be trained on how to read research. It’s the responsibility of any form of a writer or institution to be based on evidence and be accurate.”