Though awareness around mental health has increased, Obsessive-Compulsive Disorder (OCD) is frequently misunderstood and its complex, debilitating symptoms downplayed because of pervasive misconceptions.
Kylie Berko, 25, is one of the 2.5 million adults in the U.S. living with OCD, and juggles its symptoms everyday. She feels phrases like "I'm so OCD," that are often thrown into casual conversation perpetuate a myth that the condition is solely focused on personality quirks and cleanliness. This pervasive misunderstanding not only trivializes the struggles faced by those living with OCD but also hinders effective diagnosis and treatment.
"Growing up I always knew my mind worked differently than my friends," Berko, who is based in Naples, Florida, told Newsweek. "Missing out on sleepovers, counting buildings around me, the checking and rechecking of appliances in my home, and the certain distressing thoughts my mind seemed to never let escape.
"Luckily, I was diagnosed at a young age and was able to form a deeper understanding of my obsessive thoughts and the compulsions that come from them."
While Berko was able to receive the support she needed early in life, getting an OCD diagnosis and proper treatment can take 14 to 17 years on average for adults. In one study, family physicians misdiagnosed 50.5 percent of OCD cases.
Berko, who is a book reviewer and blogger with over 17,100 followers on TikTok, received viral attention after shedding light on the misconceptions surrounding OCD. In a break from her usual content, which centers around trending books, Berko shared a post in which she directly addressed the expression, "I'm so OCD," which some people without the condition use to describe a penchant for organization. Her post, which was shared on May 17, has been liked more than 69,000 times.
Understanding OCD
"In a nutshell, OCD is persistent unwanted thoughts or behaviors that the sufferer feels compelled to repeat," Sarah Boss, clinical director of The Balance Rehab Clinic, explained to Newsweek. "The compulsion is the attempt to ignore or suppress the thoughts, urges, or images or to neutralize them with another thought or action."
Berko's post, which begins with a photo of herself accompanied by the overlaid text, "OMG I am so OCD I love having everything organized," quickly pivots to reveal the stark reality of living with the condition.
The creator, who is known on TikTok as @kylieisreading, describes her struggles with intrusive thoughts and compulsive behaviors, sharing examples such as taking photos of her medication to ensure correct dosages, fearing she had caused car accidents and repeatedly checking her pupils for stroke symptoms.
Berko's journey took a positive turn when she found solace in reading and sharing book recommendations with other avid readers. Her growing following online gave her the confidence to begin writing her first novel. She decided to open up about her life with OCD after coming across a trend on the platform that encourages users to talk about their struggles on a deeper level.
"I decided to show others online some of my obsessive thoughts, like 'me when I have to refill my water bottle multiple times because what if I put chemicals in it,'" she said. "I wanted to let people know that if they have similar obsessive thoughts or compulsions, they are not alone and that they do not define us."
Psychiatrist and psychotherapist, Boss, emphasized that OCD manifests in various ways in different people. Some of the more common behaviors can include checking, counting, cleaning or performing rituals.
"There is often a frightening belief that if they don't perform the compulsion correctly, something bad will happen," she said.
And as for the major misconception that OCD is solely about cleanliness or fear of germs, Boss added: "You can't be a little bipolar or a little OCD. That doesn't exist. This person might be type A and need things organized at all times. This is not OCD."
Challenging the Stigma
Berko's video has resonated deeply with viewers.
"The comment section is filled with others being vulnerable and sharing their experiences," she said. "Others have even found that people have similar OCD tendencies, making them feel less alone."
The support and understanding Berko received from the post highlight the importance of accurate representation and awareness of conditions like OCD. She feels that her candid portrayal of the disorder can help dismantle stereotypes.
The budding author's advocacy extends beyond TikTok, as she has been contacted by NOCD, a mental health service based in Illinois, for a potential partnership to help others struggling with the condition.
"The response to my video made my heart feel so full," Berko said. "The love and support were overwhelming and made me feel less alone too."
Viewers have also taken positively to her transparency, with many sharing their appreciation in the comments section.
"I know exactly what you're going through, I'm so sorry for you and I truly hope that you'll get better soon, OCD is so much worse than people think," one user, @annelie..07, said.
Another, @tasharyland, added: "Convincing myself I left the front door open when I left, and my dog will run out or I'll get robbed."
"It was the hardest when I didn't know why I couldn't sleep as fast as others, spending my first thousands of nights alive wondering why I couldn't fall asleep as fast as everyone else if at all," a third user, @100milliondeadcops, shared.
Berko's message is clear: OCD is a condition not a catchphrase, and it's essential to approach it with understanding and empathy. The casual misuse of the term diminishes the struggles of those who live with it daily, and by raising awareness, Berko hopes to create a world where the disorder is both understood and respected.
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