‘I’m so OCD’: Mental health advocate Tia Wilson on the destigmatization of OCD and its portrayal in pop culture

For Tia Wilson, living with obsessive-compulsive disorder got worse before it ever got better. Much of her life was spent feeling as though people “understood how to function in the world” better than she did, and she lacked an understanding of what it was she was going through. This lack of awareness of OCD at the time resulted in Wilson feeling “chronically left behind.” It was around college when she reached her breaking point.

“I just was feeling really debilitated. I wasn’t able to get out of the house to go to my classes, just basic, you know, activities of daily living,” Wilson told In The Know by Yahoo. “So things like showering and eating and, you know, communicating with people felt really inaccessible. And, like, they just took so much mental energy. I felt exhausted, and it finally reached a point where I recognized that something was going on.”

In the United States alone, obsessive-compulsive disorder affects approximately 2.5 million adults, or 1.2% of the population. The disorder is characterized by “unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings” and results in a “cycle of obsessions and compulsions.” About “one-third of affected adults first experienced symptoms in childhood.”

After getting a professional diagnosis and being told her OCD was “clinically severe,” Wilson began cognitive behavioral therapy, specifically exposure and response prevention — also known as ERP — in an effort to mitigate her symptoms.

“I’m most proud of the fact that I was navigating this, this treatment, which is exposure and response prevention, so it’s really just taking anything that you’re scared of and facing it head-on without doing anything to calm down from the distress,” she said. “Just the fact that I was able to do that. It’s such a hard process. It just takes a lot of, I think, courage, to be able to face your biggest fears head-on like that.”

Wilson did exposures that revolved around overcoming scrupulosity OCD, “or just more of the religious-based OCD,” where she had “a really intense set of moral rules” and a “heightened black-and-white way of viewing morality.”

“So things like I was always so scared of, you know, if I left my house, what would happen if I accidentally cuss someone out on the street? Like, what would happen if I just started, like, yelling obscenities, you know? That was always a big fear. So in exposures, I got to practice yelling obscenities and sitting with the distress of it without trying to calm down,” she said. “And so it sounds really, like, a silly thing to practice. But I’m just proud of myself for leaning into the process and not trying to run away from those things I’ve been running away from forever.”

“ERP, it’s very counterintuitive. It feels like the exact opposite of what you should do because it’s like, ‘OK, I’ve always run away from these things I’m scared of and you’re telling me to face them and also not let myself calm down.’ … Like, let the scary feeling be there. But it works because it helps our brain learn that it’s not so much of a threat,” Wilson continued.

Through her social media account, website and partnership with NOCD, a mental health company that provides virtual exposure and response prevention therapy, Wilson has really embraced advocacy work, but sharing her story wasn’t always easy.

“I have always been someone who really, really likes to share my journey. So as I was going through my own treatment process, I was thinking about ways to share it with other people. But in the midst of my treatment, I had no desire to do advocacy. It felt so scary to share what it was I was experiencing; I felt so much shame and uncertainty around it,” she admitted.

To Wilson’s surprise, audiences really took to her vulnerability.

“And I remember the first time I, you know, posted on Instagram, kind of sharing what I’d been through, sharing that I had gone through this treatment. It was one of the scariest moments of my entire life,” she said. “And I just was so amazed by the love and support I received around it.”

“I needed someone to be able to point out the symptoms, I needed that awareness earlier. And so if I can provide that for even one other person, then it’s all worth it,” Wilson added.

The average length of time for someone to be diagnosed with OCD, according to Wilson, is 17 years. Changing the language around the disorder plays an important role in helping people better recognize their symptoms, seek out a diagnosis and eventually begin treatment. This call to action, however, extends beyond the scope of our communities — it also affects mainstream media and pop culture as a whole.

“In the media, OCD is portrayed as this really quirky, fun little thing. Just a little bit more, more clean, more focused on order,” she said. “And often, they really miss the mark because they’re only talking about one manifestation of OCD, which is that cleanliness, the contamination OCD where people are worried about germs.”

Contamination OCD, Wilson notes, is just one subtype of many. Monica Geller on Friends, who was famously played by Courteney Cox, was heavily characterized by what appeared to be her unrelenting need for order and cleanliness. In the Season 1 episode titled “The One With the Butt,” Monica is literally kept up at night thinking about the “misplacement” of the ottoman in her apartment.

The harmful repercussions of portraying Monica’s supposed OCD in this manner are twofold: First, her distress is treated purely as comedic fodder, and second, this depiction of OCD as pertaining strictly to cleanliness or orderliness ignores the other debilitating subtypes that exist.

“But in reality, OCD can show up with your relationships, your religion, your sex life, your, you know, you name it, it can show up in so many different aspects of your life,” Wilson explained. “So it’s so sad when we see people like Monica from Friends just being this, like, little quirky representation, or people are laughing at it, or, you know, there’s so many classic examples of this being used in a way that just really mischaracterizes how significant it is and how wide its symptoms can range, and it does such a disservice because it keeps people stuck.”

Wilson also argues that there’s a misunderstanding of what intrusive thoughts actually are.

“There’s this huge push right now in media to where people are kind of calling their intrusive or their impulsive thoughts ‘intrusive thoughts,’ so they’ll be like, ‘Oh, ha ha, I had an intrusive thought to cut my hair today’ or ‘I had an intrusive thought to, you know, kick this little wall as I was walking,’ and that’s not really what intrusive thoughts are,” she explained.

Impulsive and intrusive thoughts differ in that intrusive thoughts are “highly, highly painful and really, really difficult to live with.”

“Intrusive thoughts again go against our values. They’re ego dystonic,” she said. “They go against the things we want to be thinking. They’re highly distressing. And I wish people understood that a little bit more and we could reduce some of the generalized shame around them, recognizing they aren’t things we’re choosing.”

While OCD has the capacity to make people feel debilitated or alone in their suffering, there is hope. Through her advocacy, Wilson wants those who are struggling with the long-lasting disorder to recognize that while it isn’t curable, recovery is certainly possible. Wilson’s OCD is now “subclinical” and impairment isn’t nearly as disruptive for her.

“OCD was driving my car, and I was just along for the ride. I had no control before, and now OCD is this little teeny backseat driver that tries to tell me where to go but doesn’t really get to touch the wheel. It doesn’t get to dictate or drive,” she said. “And so I just wish more people recognize that treatment is out there, and that they don’t have to suffer alone. That there’s not any shame to experiencing these different, intrusive thoughts. That they are things that really everyone deals with, and that you can still have a very, very fulfilling life despite them.”

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