Individuals with OCD are discovering group and help on TikTok
The past 11 months have been incredibly tough and isolating for so many of us. While few would need to be convinced, a survey by YoungMinds late last year found that a staggering 67% of 13-25 year olds believe the pandemic will have long-term negative effects on their mental health.
Throughout the lockdown, discussions about mental health have become a central topic of TikTok. Many, including therapists, have focused on the platform to find and offer support and solidarity with those trying to deal with symptoms made worse by isolation. This is especially true for those of us who live with obsessive-compulsive disorder (OCD). At the time of writing, TikTok’s # OCD hashtag has around 650 million views.
Everyone knows it by name, but there are so many common misconceptions about Obsessive Compulsive Disorder. It’s an abbreviation for describing people who are neat, clean, or well organized. Anyone who’s watched the high school musical drama Glee in the late 2010s may remember teacher Emma Pillsbury, who regularly performed her cleanliness compulsions – like cleaning her food – with a big smile on her face. More recently, celebrities have been diagnosed with obsessive-compulsive disorder, such as Khloe Kardashian, who calls her cleanliness a “KHLO CD”. The reality is of course far more complex than these representations. Defined by the NHS as “a mental health condition where you have repetitive thoughts and repetitive behaviors that you cannot control,” there is actually no fixation on cleanliness or external signs of suffering for many with OCD. Instead, it’s a daily battle in the head.
Ainslie, an 18-year-old better known as @ ace.of.skates on TikTok, started talking about OCD in her videos in April last year, around the start of the first lockdown. She wanted to give people a glimpse of what it is like to live with this disease every day and dispel some of the myths and misconceptions that are associated with it. “The term ‘OCD’ is often taken out of context,” she says. “People always say, ‘I’m so OCD! ‘or’ I’m a little OCD today ‘. ”
For Ainslie, her obsessive-compulsive disorder manifests itself in the need to meet a series of compulsions before she can start her day. She describes all of this in her most watched TikTok video. Before getting out of bed, she has to blink, rub her eyes, and then rub her eyebrows eight times at a time. She sits on the edge of the bed and then taps the floor with each foot before stomping the floor eight more times. Eventually, she needs to clench and loosen her fists and pet her cat before she can start her day. These repetitive behaviors – the “compulsive” aspect of anxiety disorder – are repeated until Ainslie feels she did it “right,” which often takes up to half an hour a day.
Compulsions like these are used to temporarily relieve or neutralize uncomfortable feelings of fear and panic. This can be counting, hand washing, cleaning, tapping, or needing sedation. But many people’s obsessions involve the presence of unwanted thoughts, images, or memories that immediately induce anxiety. As we know, the fear of contamination is one, but many suffer from a fear of harming someone or themselves, or the existence of unwanted sexual or violent thoughts in their minds.
These are actually perfectly normal thoughts that go through everyone’s mind in various forms. It differs from obsessive-compulsive disorder in that a particular thought that creates an overwhelming sense of fear plays on a loop, like the brain is getting stuck. The compulsions temporarily stop the loop, but in the long run they actually increase anxiety and worsen obsessions.
Maia Kinney-Petrucha, 25, of New York, is a self-described “pushy person” who was diagnosed with severe OCD at the age of four. “All my life I’ve struggled to find ways to explain what was going on in my head,” she says. “It wasn’t until I found other people with obsessive-compulsive disorder that I became more open to sharing my experiences.” The pandemic inspired Maia to create content similar to Ainslie’s via her TikTok @jambamaia in an attempt to eliminate some of the most common mistakes people make regarding the disease. “I knew people like me had problems because suddenly there was a very real risk of contamination,” she says. “I started with a simple TikTok about the misconceptions about OCD and it got a lot of traction.”
My own obsessive-compulsive disorder revolves around fear of bad things happening to those I love. So COVID has really added to my worries, and the extra time at home has increased how long I’ve been trapped in patterns of negative thinking and behavior. When I see people speak so openly about their experiences on TikTok, it feels like a weight has been lifted off my shoulders. I no longer feel so alone or burdened with shame. This enabled me to seek professional help after hiding my OCD for 15 years.
The clinical psychologist and OCD specialist Dr. Tatyana Mestechkina believes that these types of online communities can be extremely valuable. “When people are open to their experiences, they can begin to accept their state and work on overcoming shame,” she says. “These online areas can allow people to feel validated, understood, and less alone.”
However, TikTok videos on mental health issues can be harmful. “It can perpetuate misinformation, minimize the condition and trigger others with OCD, and even become a source of unhelpful reassurance that can make the OCD worse,” she says. “There is also a risk that people will turn to these videos to obsessively compare their progress with others, which can further fuel the condition.”
The #OCD thread certainly has the ability to platform inaccurate and misleading content. One particularly successful thread of videos sees users arranging aesthetically pleasing items in a perfect row, or sucking perfect vacuum lines into the carpet, or color-coordinating their food and labeling it “cured” for supposed obsessive-compulsive disorder. “OCD is not an adjective,” warns Dr. Mestechkina. “When people abuse it on TikTok videos to point out tendencies to be clean or organized, it can be very invalid for people in great pain.”
The OCD specialist Dr. Lauren McMeikan believes that TikTok is capable of bringing lightness and humor to a very challenging subject, but has noticed a spread of misinformation about OCD on social media platforms. “I’ve seen unapproved OCD trainers promoting“ cures ”on OCD, and even recently someone suggested that heavy metals can cause OCD. Unfortunately, anyone can get a following even if they are not qualified. “
It is important to know that TikTok users are rarely trained experts. Regardless of how meaningful their content is, it is especially important to be careful when advising on medication and therapy, as expertise is always the most valuable.
Ultimately, the best rooms for these discussions, whether on TikTok or other platforms, are those moderated by someone who has experience with OCD. Dr. McMeikan recommends being aware that TikTok – or other social media – is not a resource in its own right. She suggests it be used in conjunction with other recovery aids such as books, specialist articles, support groups, and therapies. For me, seeing that there are others out there who really understand what I’m going through has helped me feel less alone. In addition to professional help, having a virtual OCD community was an important step in finding the courage to tell my friends and family about what I went through.