Approximately 750,000 people in the UK live with OCD yet, despite its commonality, misconceptions about the disorder are thriving. Here, we speak to people personally affected by the 'perks' and pitfalls of OCD online
‘I’m so OCD when it comes to my baby — all his outfits must match!’ reads the first tweet that comes up after a quick social media search for ‘OCD’.
Others reference the disorder as the reason they don’t like having unread notifications on their phone, another for improper grammar use. These posts aren’t hard to find — there are dozens of them.
Around 750,000 people in the UK live with Obsessive Compulsive Disorder (OCD). With this in mind, and considering the recent surge in mental health awareness, it would be reasonable to expect outdated myths and perceptions about the disorder would be fading out. But while the mental health conversation continues to broaden, it can often feel that OCD stigma is holding strong.
“I still think there is a lack of understanding about mental health generally, and I’m sure a lot of other conditions are in the same sort of place. But I do feel that OCD in particular seems to be the butt of the joke,” says Olivia Bamber, Communications Manager for national charity OCD Action. In addition to providing support and information to people affected by OCD and their families, the charity also campaigns to change the national response to the disorder, and bring with it a newfound understanding of how debilitating it can be. “It must be down to a lack of understanding of [OCD], but it is still used commonly as a bit of an adjective.”
And this isn’t just happening online. Olivia shares that most days the charity encounters problematic merchandising.
Another swift Google search provides me the option to purchase an array of t-shirts and mugs with a slogans as dismal as: ‘Obsessive Cat Disorder’ and ‘Obsessive Christmas Disorder’.
These misrepresentations of OCD online and beyond are more than just a small gripe, they trivialise the disorder and can be detrimental to individuals unknowingly experiencing OCD.
This was the case for James, 26, who experienced unwanted, persistent sexual thoughts, but had no idea that he was suffering from a mental health condition.
These misrepresentations of OCD online and beyond are more than just a small gripe, they trivialise the disorder
“From the ages 14 to 17 I had severe sexual thoughts that traumatised me,” James shares. “Even though it’s clear now that it’s OCD, I didn’t know what OCD was back then.”
He says that the misinformation, and false narrative that illustrated OCD as a desire to clean and be orderly, left him in the dark.
“I didn’t even consider that it could be OCD as I thought that was about organising your CDs and stuff,” James continues. “No one ever said that it could include sexual thoughts too, so I stayed silent, not even knowing what was going on in my own brain.”
According to Olivia, James isn’t alone. “A lot of people will live in silence for a long time,” she says. “We speak to people through our support services who often wait 10 or 20 years before telling anybody”.
She puts this silence down to feelings of shame and guilt that often surround OCD. “OCD is an incredibly difficult thing to live with. It can at times feel very isolating. It’s often nicknamed the secret illness, where people do hold onto those symptoms on their own and maybe don’t speak about them for fear of being misjudged”.
Steven McFarlane is a Cognitive Behavioural Therapist with his own private practice, and has worked with people with OCD for more than five years. For Steven, meeting people who are seeking support without knowing they’re experiencing OCD is a common occurrence.
Steven offers a number of reasons why this might be the case, with people often “not aware of it because they’re caught up in it”, where they’ve lived with their intrusive thoughts for so long and have a “lack of terminology to express it”, or because they are “feeling a sense of shame” and can’t speak to any close connections about their thoughts or urges.
But while the online void irrefutably offers a space for people to disregard OCD as a quirk, it also offers ample opportunity to build crucial understanding of its reality.
James highlights that it was online where he learnt about what OCD was, and says it was the first moment in a long time that he felt “not crazy”.
“I stumbled across an article about intrusive thoughts and I just burst into tears,” James explains. “It was a release. For the first time, I realised that it wasn’t me being evil or vile or a monster, it’s an actual thing. It’s a disorder that could happen to anyone.”
On good days, there now appears an equal number of tweets calling out the misuse of OCD as there are contributing to it. This is something that Olivia identifies. “Social media obviously can have its negative points for a lot of people, but from an awareness perspective, it can be very positive” she states, underlining how social media provides a platform for people to share their real-life experiences with the disorder.
Activist Becca Rawlings co-founded the website The Secret Illness in 2015 after supporting her mother through an OCD diagnosis. The website offers an outlet for people to creatively share their stories of living with OCD, with contributions including poetry, spoken word pieces, and films. The site also offers a gallery platform, The Wall, where individuals can anonymously share their experiences. The result has been a burgeoning community within which people affected can take solace, seek support, and feel empowered.
“There [has] seemed to be a real power for the individual in taking something that has really disrupted their lives — a really dark and horrible part of their day-to-day worlds — and turning it into something tangible and real and beautiful,” Becca says.
“We’ve received so much feedback from people saying how they thought that they were the only one, and they’ve never said out loud what their thoughts are because they believed them to be either so horrendous or unusual… Then sitting and reading something with similar kind of trajectory, had really helped them realise that OCD is a disorder, and they’re not mad, and that there is help out there.”
Becca suggests that the sense of community offered by social media and the internet is invaluable, particularly due to their global scale. Users are able to seek support from others with the disorder — often people who they otherwise wouldn’t come into contact with. She does, however, acknowledge the potential limitations: “There’s a danger of preaching to the converted.”
Social media is a particularly notorious echo chamber, and Becca highlights the necessity of reaching people disconnected from the disorder if we are to genuinely raise awareness. The activist notes a need for us “reset” people’s beliefs of what OCD entails and stresses its often paralysing implications. “Most people think they know all there is to know — but they know hand washing or matching socks, those kind of things.”
Both Becca and Olivia believe that creative work, particularly when shared online, is an inexplicably powerful tool – not least as a cathartic release for the creator, but also for the impact it can have in reaching a wider, perhaps unaware audience.
Even for individuals who are well-versed on what it means to have OCD, there’s still an unprecedented need for the right knowledge to be accessible – knowledge that goes beyond surface level or that just touches on OCD’s realities. In 2015, OCD campaigner Ashley Curry launched the #AskAshOCD hashtag on Twitter after being encouraged by a friend. The hashtag later became recommended by mental health charity Mind.
If run well with correct information, online communities and hashtags can help people feel less alone
“The idea was to get correct information out there, and hold weekly chats on Twitter. Topics were chosen by people each week, which involved those who lived with [OCD and] those who cared for [people with OCD] too.”
Ashley states that, if run well with correct information, online communities and hashtags can help people feel less alone, find support, and act as a signposting tool to other beneficial resources. He found that the #AskAshOCD hashtag not only became a space for people to safely share their experiences, but also for leading OCD experts to engage and share their advice and research.
When utilised correctly, it’s clear that social media can become an easily accessible support system and knowledge hub.
It’s an unsettling truth that understanding of OCD both among those who have it, their loved ones, and the general public, remains alarmingly low. It’s evidenced through tasteless merchandise, disrespectful online comments, and through the lived experiences of individuals with the condition. The dire need for positive awareness and the decimation of stigma and has never been more apparent.
As Becca see it, OCD remains the “secret illness” it was when she co-founded the website of the same name five years ago, though she remains hopeful that the future will bring a shift.
“I believe there will be a corner we turn where people feel much safer to share how they’re feeling. When you go on Twitter and look at OCD community groups, the love is so strong and so supportive.”
Achieving this goal will be a mountain rather than a molehill, but the hope that OCD will be swept into the current of mental health talk keeps campaigners going.
“I think we need to keep sharing honest stories” Becca says. “Raising awareness of all sides of OCD and all the ways it manifests is so vital for everyone, because how can we support those around us if we have no idea what they’re living with?”
Another brief Twitter check: ‘My OCD is happy’ one user writes, content that their follower count is at an even number.
‘Please read what OCD really is’, writes another. ‘…just spreading the word.’
And thank goodness they are.