It’s the height of the first lockdown and on my permissible daily walk, I’m on a call to a friend struggling with a confession. I’m absolutely convinced I have a problem but I can’t seem to find the right words to communicate that to her.
Telling the first person any kind of secret is always hard. You anticipate that their reaction might affect how you view yourself - whether you'll feel it's a weight off, or double down on potential shame. Saying something out loud feels like a confirmation, like something becoming real that was only a suspicion before it was uttered. And you might have to come to terms with a new version of yourself.
I finally get the words out: 'I have OCD.' I could’ve burst into tears but manage to keep myself composed, the two metres distance wouldn't have been enough to conceal an ugly cry from passers by. My friend asks when I got my diagnosis, which startles me, you see I didn’t have an official diagnosis from a medical professional.
I diagnosed myself, after recognising my symptoms on social media. It started with a podcast. I was listening to an episode called 'OCD and intrusive thoughts are ruining my life' from the On the Edge podcast with Andrew Gold. Journalist James McMahon was describing an experience that felt uncannily like mine. Then, I spotted an Instagram post about obsessive thoughts, and then another about compulsive behaviour and then before I knew it, I was enrolling in OCD TikTok. It became inescapable every time I opened my phone and the more I looked, the more I became completely convinced.
I can appreciate how ludicrous it might sound to other people. But social media is an incredible facilitator for finding your community. It’s basic instinct to gravitate towards your people, like-minded individuals experiencing life in a similar way to you. And social media allows people to come together - through hashtags, themes and content filters - even if they're separated physically by thousands of miles. I found my community, it's just that the content theme was a mental health condition.
A New Class Of Influencers
I'm not the only one subscribing to mental health content in this way. On TikTok, the hashtag #BPD (borderline personality disorder) has 3.7 billion views, #bipolar has 2 billion, and #DID (dissociative identity disorder) another 1.5 billion.
A new class of social influencers has been forming. Self-appointed mental health influencers have been stealthily corralling their tribes on various apps. On the surface, plenty of the videos just depict young women - in some cases teenage girls - unburdening themselves of their feelings and experiences. Other clips are designed to showcase some of the symptoms associated with different health conditions. There are videos of Tourette Syndrome tics, and reels of young women seemingly switching from one personality to another. More controversially, there are the videos which help to encourage self-diagnosis.
Often, these posts consist of a quick succession of edited together video clips, a bit like an internet listicle, reeling off a set of symptoms which are generally quite vague. For example, I was watching videos titled 'Signs you may have OCD,' which then listed indicators like 'making things even,' 'obsessing over people' or 'being unable to let go of things.' All of which may to some degree be symptoms of obsessive compulsive behaviour, but I would advocate are also, to a lesser degree, just part and parcel of being a self-conscious young adult.
The Positives In Community
There are positives, of course, to the burgeoning of online communities focussing on mental health. The NHS is strapped and there are sometimes enormously lengthy wait times for mental health treatments, which often amount to just a short series of telephone sessions, which I'd argue aren't adequate and can deter people from reaching out to their GPs at all. Social media has gone some way to fill a void in the conversation around mental health. It has given people an outlet, built communities, created safe spaces and chipped away at the stigmas.
As Zoë Aston - BACP accredited therapist, mental health consultant and author - puts it: 'Being able to identify problematic thoughts, feeling and behaviours is helpful. We’ve all been taught to notice changes in our body, on our skin and we know from an early age that physical pain is a sign that something is wrong. So there is no harm in being able able to identify the equivalent for your mental health. We know that it can be really difficult to get professional help, support and diagnoses unless you have the cash to go private. NHS waiting lists can be anything between several weeks and a couple of years depending on what the issue in hand is and a lot can happen in that time, so it’s really helpful to be able to spot symptoms and then know where to go to find the resources to help yourself.'
Issey Moloney, 17-years-old, has over 5.7 million followers on TikTok and regularly speaks about mental health. She strongly advocates for her following, stating: 'Mental Health online communities are important because they help people feel less alone, it gives them something to relate to.'
All this is true, community is hugely important, especially if it generates awareness and conversation around things which have often been taboo, but I can't help but feel that there are dangers associated with self-diagnosis.
A Case Of Misdiagnosis
The way social media, specifically TikTok, works is that it will show you content you’ve liked or you’ve spent time watching. The algorithm will serve to the user similar posts and videos to what they've consumed in the past, even when they are not actively looking for it. So, you become trapped in this loop of watching the same kind of thing over and over again. Considering that we're quite suggestible as a species, it strikes me that if someone repeatedly sees content for a personality disorder, especially if the symptoms listed are in any way ambiguous or open to interpretation, they might begin to believe that they have it.
Recent statistics corroborate the idea that misdiagnosis is happening more frequently. The National Alliance reports that borderline personality disorder is extremely rare, just around 1.4% of the U.S. adult population is estimated to have this condition. However, because each of the symptoms 'also meet the criteria for multiple other diagnoses', it means that 'BPD is one of the most commonly misdiagnosed mental health conditions' out there.
In a really interesting, but perhaps alarming development, according to the British Medical Journal (BMJ), in the last couple of years psychologists in the UK have reported seeing an 'explosion' in 'tics and tic-like attacks' such as you might associate with Tourette Syndrome, primarily in adolescent girls. And among the teens, a common factor is the consumption of mental health content on TikTok.
The phenomenon isn't just confined to Britain. Caroline Olvera from the Department of Neurological Sciences at Rush University Medical Center in Chicago also looked at girls displaying tics. A common tic among the group that she examined was saying the word 'beans' in an English accent, even among teens who didn’t normally have an English accent. On further investigation, it was found that they had all watched a popular British Tourette influencer with over 14 million followers, who displayed the exact same 'beans' tic.
The suggestion here is that - even if subconsciously - these young women are in some way adopting behavioural quirks that they have seen in someone else. What is more, Rush University suggests that 'TikTok tics are distinct from what is typically seen in patients with Tourette syndrome,' indicating that they are perhaps a different sort of behavioural episode, that looks a bit like Tourettes, but isn't. The BMJ study also cites the potential for ‘social contagion.' Specifically, it says: 'the role of social media [...] suggests some directly testable hypotheses that could be the focus of further research in this latest twist in the long story of inflammation and the mind.' In other words, it seems entirely possible that immersing yourself in lots of personality disorder content might convince you of a behavioural health issue of your own.
The Danger Of Getting It Wrong
Diagnosis is a delicate practice, even for medical professionals with years of experience and training. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is constantly evolving, reflecting nuances in conditions that we're only just learning about.
'False diagnosis can be dangerous,' says Aston. 'Worst case scenario, you might convince someone to prescribe you medication that can worsen your wellbeing. But diagnosing yourself incorrectly can also have huge effects on your self-esteem, encouraging feelings of shame and self-loathing.'
Doctor David McLaughlan – Consultant Psychiatrist at Priory Hospital Roehampton - echoes this thought: 'There are often lots of overlapping symptoms between conditions, which can lead to people misdiagnosing themselves. For example, in my clinic, I sometimes meet people who have self-diagnosed themselves with bipolar affective disorder (BPAD) when in fact they have another condition known as emotionally unstable personality disorder (EUPD) or attention deficit hyperactivity disorder (ADHD).
'The problem with a misdiagnosis is that it delays you from getting access to the right treatment and support. This can prolong the distress people experience or cause side effects from inappropriate medication or treatments.
'Sometimes people become really invested in a specific diagnosis and it can be hard for them to hear that they have something else. No matter what, I'm always really keen to validate my patients' experience and the symptoms they describe.'
What Is The TikTok Take?
Tiktok has overtaken Instagram in popularity among teens, according to a recent report from Forrester ResearchInc. In 2021, 63% of U.S. 12-to-17-year-olds used TikTok every week, up from 50% in 2020. And in the UK, TikTok users are spending 27.3 hours every month on the app, a rise of 37 per cent. But for a platform that's growing at such a rate, what are they doing to address some of the pitfalls of the algorithm?
Late last year, TikTok released a statement, which announced the testing of changes to its algorithm, which may prevent the consumption of too much of one type of content. For now, TikTok users can select 'not interested' on a video if they don’t want to watch more videos from a particular creator. They also announced they’re working on a feature which allows its users to block certain words and hashtags associated with content they don’t want on their feeds. In a statement to ABC News, a TikTok spokesperson said 'We care deeply about the well-being of our community, which is why we continue to invest in digital-literacy education aimed at helping people evaluate and understand content they engage with online. We strongly encourage individuals to seek professional medical advice if they are in need of support.'
So What Should We Do?
Self-diagnosing can be positive, in that it can be a relief to feel seen, it can be enormously beneficial to find people that can empathise with how you've been feeling and it can be a stepping stone to seeking out the correct medical help from professionals including physicians, psychiatrists, nurse practitioners, psychologists, social workers, and counsellors.
However, it is also hugely important to approach social media with a degree of distance too. Remembering that many of the people posting about mental health conditions don't have qualifications and the limitation of short video clips, 10 slides or 140 character blogs, is that symptoms and facts are often reduced, oversimplified or rendered vague and ambiguous. And those are not the foundations for an accurate exploration of what's going on in your brain.
'My take home advice', says Dr McLaughlan, 'is to critically appraise the quality and source of information. Is the person you're following on social media a legitimate, verified expert or are they an influencer trying to sell you something? Also remember not to over-generalise one individuals' unique experience, especially when it comes to diagnosis or treatment. It's always better to have these conversations with a doctor or registered psychotherapist.'
'I am a huge fan of mental health communities online,' Aston insists, 'I think everyone should have access to the help we need in looking after our mental health the same way we do our physical health - in fact I wrote a book on it - Your Mental Health Workout and I run an instagram account that offers free education and support for anyone who wants it.
'But joining a mental health disorder community is quite different...Please ensure you do not use these as a way to isolate yourself further. Seek support in real life - it’s essential.'
As for myself? I took a giant step away from the OCD community online. Referring to the NHS website and talking to a friend who is a psychiatrist helped calm my anxieties around it. I have requested time to talk to a professional through my GP, and am still waiting to be seen, but I have come to understand that I do not, after all, have OCD.
For information about the NHS' mental health support services CLICK HERE
For specific medical resources about personality disorders CLICK HERE
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