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The benefits and dangers of self-diagnosing your mental health online

Our timelines are full of people talking about anxiety and depression – but where's the line between helpful conversation and harmful appropriation?

Mental Health: Beyond Awareness is a five-day campaign asking what we can do for mental health issues beyond ‘raising awareness’. Young people are more aware of mental health issues than ever, but our services are broken, the internet is stressing us out, and self-medication is on the rise. Who is campaigning for change? And how can we help ourselves? This week, Dazed is aiming to find out.

Despite having been told by a doctor that I was probably having panic attacks while playing football as a teenager (I thought I was dying of an asthma attack, obviously), it wasn’t until the recent proliferation of mental health awareness campaigns – often driven by social media and the admissions of celebrities like Zayn Malik and Kesha – that I started considering the possibility that I actually have, or once had, a diagnosable anxiety disorder. Until very recently, I wouldn’t have ever been found talking about “my anxiety” as though it was a tangible thing. I thought that being an inherently shy, sometimes overly anxious person was just part of my identity, rather than something that could be treated.

However, just as I have noticed people (myself included) becoming more comfortable with describing, and self-diagnosing themselves as having anxiety, especially on social media, so I have seen more and more backlash to the descriptor. “There is a challenge there, because of course anxiety is a disorder, but also anxiety is a very common experience and symptom,” explains Professor John Powell, a public health doctor. “It’s the same with depression: we can say ‘Oh, I had a bad day, I feel really depressed’, we don’t mean we have a depressive illness, but unfortunately we use the same word. It is complicated”.

THE RISE OF SELF-DIAGNOSING ONLINE

As mental illness becomes increasingly visible and slowly de-stigmatised, and access to NHS services is limited, there’s no doubt that more and more people are diagnosing themselves using the internet. Alongside regulated content – like the NHS website, which has a ‘Mood self-assessment quiz’ using questions that GPs often use to assess whether someone is anxious or depressed – there are dozens of unregulated apps, YouTube videos, and web pages all claiming to identify and help people’s mental health problems.

Charles Marshall runs a YouTube channel called Authentic Mental Health, which features him in front of the camera. His video, titled “Do you have anxiety? (TEST)” has over four million views, and the channel also has “tests” for bipolar, depression, and social anxiety. Although the 24-year-old admits he has had “no training or support in mental health”, he believes his own experiences suffering from an anxiety disorder and depression have put him in a good place to help others. “I have seen many different counsellors and therapists from the NHS and even paid privately,” he says. “None of them help, and they all say the same thing over and over again because they haven’t suffered themselves, so they don’t know what people are going through.”

Despite the fact that Charles says “a lot of research” goes into each video he makes, and that they do not exist to help people self-diagnose (there is a disclaimer in the video, “do not self-diagnose yourself from this test” and “if you think you’re suffering after this test please see a doctor or a specialist and mention you did an online test”), the comments suggest otherwise. A recent comment reads, “I got 6 out of 8....how do I explain this to my mom....I'm only 12 and I have already suspected I had it but my mom will think I'm just playing around”. Another: “I got 8/8 😕I sorta already knew I had anxiety”.

For many people, his videos are all the confirmation they need to believe they have a disorder. The videos link out to BetterHelp – an online paid-for counselling service with mixed reviews – which costs between $45 and $65 per week. However, another recent comment reads, “WARNING - DO NOT TRUST THIS VIDEO 100%. JUST BECAUSE YOU GOT A HIGH MARK ON THIS TEST DOESN’T MEAN YOU HAVE ANXIETY. THE SAME WAY THAT IF YOU HAVE A LOW MARK YOU CAN STILL HAVE ANXIETY. I HAVE SEVERE GAD (Generalised Anxiety Disorder) BUT GOT A LOW MARK SO JUST BE CAREFUL.”

“The potential problems with self-diagnosing mental health issues on the internet, is that ‘you may be missing something’ that a doctor would be able to identify”

Videos like Charles’s are part of a wider trend of self-diagnosis, with as many as 50 per cent of the UK population using the internet to figure out their conditions. Although self-diagnosis makes sense in terms of ease and accessibility, as an article in Psychology Today warns, the potential problems with self-diagnosing mental health issues on the internet is that “you may be missing something” that a doctor would be able to identify. “For example, you may be overwhelmed by anxiety and think that you have an anxiety disorder. The anxiety disorder may be covering up a major depressive disorder”.

Powell agrees that there is an “issue” with self-diagnosis on the internet – ”There’s that phrase ‘cyberchondria’ – people going online and deciding they’ve got all sorts of horrible symptoms based on it.” But he takes a more practical view of the problem: self-diagnosis itself isn't an issue, but unqualified YouTubers being part of the diagnostic process might be. “People say, ‘oh it’s terrible, people go online and diagnose themselves with cancer’, but we can’t stop them. So we have to think about how we manage the online environment. How do we give people the skills so that they themselves can make more appropriate deductions from online? People are generally more intelligent than we give them credit for.”

THE POSITIVE EFFECTS OF ONLINE SELF-HELP

There’s no doubt that the internet does have the potential to help people suffering from anxiety who either do not need clinical treatment or who do not feel they can seek it. Powell is running a study backed by mental health charity MQ at the University of Oxford, which is testing how effective online self-help programmes could be in helping people manage their anxiety problems.

“We’ve had to be careful in our messaging that we’re not providing a treatment for anxiety disorder, we’re providing self-help for people who get anxious,” he says. “Really we’re targeting this at people who don’t have symptoms that are severe enough that they would get help from the NHS. These people don’t have a mental disorder, but they might have some problem with anxiety that affects their day to day lives.”

Powell says he is open to the idea that the current self-management apps on the market could work, but says that most “have little or no evidence”, with purchasers being guided by their place in the app store. This is what his study is trying to change – but it’s true that people already receive effective cognitive behavioural therapy for anxiety disorders via the internet, and the NHS recommends self-help therapy as a “useful first step if you are unsure whether or not to seek further help”, especially if you “don’t want to have face-to-face therapy for cultural or family reasons”.

“I'm aware of how contagious emotions are. Now that we're all so connected less physically and more digitally we should be aware of the emotions we're giving up” – Poppy Jamie

Sometimes, self-diagnosis and self-help are not a choice at all, but the only thing someone has access to – something they can easily and practically use to manage symptoms on a day to day basis.

Poppy Jamie, of design brand Pop & Suki, has just launched an app called Happy Not Perfect, which is being touted as a platform to help combat anxiety and stress among millennials. She believes that anxiety is catching. “I'm aware of how contagious emotions are,” she says. “Now that we're all so connected, less physically and more digitally, we should be aware of the emotions we're giving up... Studies show that no-one feels happier after being on Facebook and Instagram. We have to do a better job in not following people who make us feel shit.”

Poppy's mum is a psychotherapist, and her app has been developed with the help of neuroscientists and psychologists from the University of California, Los Angeles. Although it’s not clear how large a role they played in its final outcome, it's a beautiful product, clearly designed with people's practical needs in mind, from a woman who has taken an extensive look into the science of the brain.

For other people – and in particular young women, it seems – more informal online and IRL mental health platforms like Adwoa Aboah’s Gurls Talk and Elyse Fox’s Sad Girls Club (specifically aimed at women of colour) provide respite. “When you talk, you realise that the pains and worries you feel are universal; you no longer feel alone in your sadness”, Aboah told Dazed succinctly in 2016, “You relate and find comfort in the fact that there are other women going through the same things as you are.” The irony of these projects existing mainly on Instagram, a platform which causes so many comparative anxious feelings for some people, is not lost.

ANXIETY IS NOT YOUR ONLINE TREND

While the difference between suffering from an anxiety disorder versus facing some anxiety on a day-to-day basis can be stark, there is no need to minimise the latter’s struggles. Even so, I’m interested in how people who have actually been through the wringer with a diagnosed anxiety disorder feel about the proliferation of anxious people on the internet who use the same terminology to describe their problems; and the obvious trend in using ‘anxiety’ as a descriptor which holds connotations beyond nervous feelings. As a viral tweet from journalist and mental health campaigner Hattie Gladwell summed up: “Anxiety disorder is not feeling nervous about a test. Please stop using mental illnesses to describe everyday emotions.”

“Of course all anxiety is not a nice feeling, but there are big differences between an actual anxiety disorder and feeling anxious,” Hattie explains further over Twitter DMs. “Many who aren’t diagnosed associate anxiousness with feeling nervous; whereas people with an anxiety disorder can experience excessive worry, panic attacks, and other more debilitating physical symptoms. I feel we need to be more careful when using actual disorders are personality traits or general human emotion, because it takes the seriousness away from people who are genuinely suffering.”

Claire Eastham, an author, blogger and mental health expert, believes she was born with a social anxiety disorder. Since her book, We’re All Mad Here, came out in 2016, she thinks awareness has improved, but, like Hattie, she does find the use of incorrect language around mental health to be jarring. “Not everyone with OCD is obsessive with cleaning the house,” she says. Overall, Claire thinks it is “great” the conversation is taking place. “We've spent so long trying to get it spoken about. Those kinds of mistakes with language are bound to happen and it's just about keeping the conversations going, so that kind of thing can be corrected. You know, in the same way you wouldn't say ‘I have a brain tumour’ when you have a headache. It's that kind of thing really, it slips under the radar.”

Having headed up a viral campaign with Transport for London, highlighting ‘please offer me a seat’ badges that can be used in a similar way to ‘baby on board’ badges by those who suffer from anxiety, Claire says she believes that the internet can be a “great source for education and has been a game changer for mental health, because that's how you research information quickly”.

Lucy Nichol, a writer who has also written a book about mental health stigmas, A Series of Unfortunate Stereotypes, agrees. Her anxiety disorder, “stopped me getting on certain buses, it made me leave meetings, it made me leave shopping queues, it made me leave the office, it was having an impact and there were times it just totally consumed me”. Despite the massive effect it has had on her life, she has an upbeat attitude when it comes to the use of the term by those who do not suffer from disorders. “Generally, I might feel anxious about something and it doesn't mean I am ill, just means I am feeling a bit anxious about something in life and that’s perfectly normal,” she explains. “And I think if having the conversation quite openly supports people as well, who maybe are experiencing anxiety as a natural reaction to life, then that’s okay, that is a good thing.”

She acknowledges that “there is an argument that services are already stretched, they are bursting at the seams, there are waiting lists. If everybody who thinks, ‘I feel a bit anxious today,’ feels that they have got to go to the doctor, then that could cause a problem – and I kind of see that point”. She also notes that there are risks in terms of people thinking they have a problem when they do not. However, on balance, she believes the internet is “creating a safer space for people who do have a mental illness – and bearing in mind, that’s one in four, you can’t really argue with it.”

The benefits of self-diagnosis and self-treatment do seem to outweigh the negatives, as long as we’re mindful of other people’s experiences and the language we use to articulate our own experiences is accurate, rather than flippant. For Powell, however, the situation is even less binary: “People tend to think, ‘is social media a good thing’ or ‘is social media a bad thing’,” he says. “The truth is always somewhere in between. We’re not going to not have social media, we’re not going to not have the internet. This is it now, this how we’re now living our lives – in the future, everyone is growing up in this digital world.”