For most, self-diagnosis is a term that elicits plenty of negative connotations. It’s common knowledge that if you tell the internet your symptoms, you’ll likely come away with a terminal diagnosis for a run-of-the-mill headache. In fact, a 2019 study commissioned by Let’s Get Checked showed that 65% of Americans were known to Google symptoms in order to self-diagnose, with 74% of that group feeling seriously stressed out by their findings.
When it comes to mental health issues however, an underfunded NHS, health inequalities (including medical racism, sexism and fatphobia) and pre-existing mental health stigmas can often stand in the way of patients getting adequate healthcare. This means that self-diagnosis can be a valuable tool in patients advocating for the help they deserve.
Stefanie, a 26-year-old career coach from London, cites conversations with Twitter mutuals and online forums including r/ADHD, a Reddit forum with 1.1 million members, as the resources that helped her to self-diagnose her own ADHD when doctors failed to spot it. “I’ve been in and out of mental health services since the age of 18 and nobody has ever suggested I have anything more than anxiety and depression. I’ve never been offered a referral to see if there was anything else, I was just given pills and sent on my way.”
Stefanie believes that that had it not been for her own confident self-diagnosis, she wouldn’t be in the position she is now; receiving treatment and helping others around her: “It took me really advocating for myself, and even booking another appointment with an entirely different doctor to finally get the NHS referral,” she explains.
Learning more about her condition, and having the tools to self-diagnose was a positive experience for Stefanie; a turning point. She is now incredibly vocal about her experiences with ADHD on Twitter, using her platform to sound off about poor quality mental health services and medical racism. “Women who look like me never get what they need,” she says.
“As someone who has been fighting for a medical diagnosis for quite a while, it was painful to have everything I’ve ever experienced invalidated by people I didn’t even know.”
It’s true that it is extremely difficult for many to access quick and adequate mental health care. Research from 2014, for example, shows that severe underfunding for the NHS means that only one in three people receive the mental health treatment that they require. And, while the government promised a £2bn boost to UK mental health services in its 2018 budget, the World Health Foundation publicly announced that this figure would require a further £1.5bn before mental health services can get to where they need to be by 2023/24. Even before the pandemic hit, 2020 figures showed that one in four patients were forced to wait over three months between their initial mental health assessment and second appointment.
And it’s even harder for people of colour. In the UK alone, according to one 2014 study, 29% of Black women suffered with a common mental disorder in the previous week as opposed to 21% of white women. When considering the fact that Black women often report being misdiagnosed or simply ignored by medical professionals, it could be argued that this 8% disparity is, in fact, considerably larger. White people are considerably more likely to get treatment for mental health conditions too — with 13.3% of white British people — compared to only 6.2% of people from Black ethnic minority groups found to be receiving treatment in a 2016 study. Against that backdrop, it’s easy to see why more young people, particularly young people of colour, are turning to social media for information and diagnoses instead.
For Stefanie, self-diagnosis played a larger role in her recovery than just advocating for a professional label for her mental health issues. “Self-diagnosis can help you find community support, understanding and empathy, which makes all the difference — formal diagnosis or not,” she says. “It’s why I’m so grateful for community initiatives like ADHD Babes who open up their space to people regardless of if they have one or not, because they know how inaccessible they can be.”
While Stef found solace in communities on Twitter, teens on TikTok appear more divided on the issue of self-diagnosis. Gen-Zers have been arguing passionately for and against it, with the tag #Selfdiagnosis raking in a staggering 5.5M views on the platform.
17-year-old Brie, who posted the above video, is firmly in the ‘for’ camp. “As someone who has been fighting for a medical diagnosis for quite a while, it was painful to have everything I’ve ever experienced invalidated by people I didn’t even know”, they told me. “Individuals who are part of the neurodiverse community often self-diagnose before receiving a medical diagnosis… sometimes even doctors and therapists miss things, so it’s important to really look into what you’re experiencing as well as expressing it to a professional.”
Mirroring Stef’s experience, Brie believes that diagnosis is a privilege, stating factors such as race, geographical location and even age as elements that might stand in your way. “Sometimes people just don’t know how to go about getting a medical diagnosis and, for some minors, parents who don’t believe in mental health conditions can stand in the way of you getting the resources you need,” they explain. Fundamentally, they believe that anyone struggling with a mental health condition deserves the same amount of support. “Not all of us are fortunate enough to receive a medical diagnosis and these people should not have to go through what they experience alone simply because they don’t have official documents.”
Being informed is so important, but you’ve got to keep going and not give up until you get the help you deserve.”
Naturally, most medical professionals don’t support self-diagnosis. Some psychologists, like Kristin Gattens, believe that while people should feel empowered to advocate for their health, self-diagnosis is something to be wary of. “For me, the danger of this is how many subtleties there are when it comes to diagnosing mental health issues”, says Kristin. She points out that in many cases, multiple mental health diagnoses (AKA co-morbidities) exist at the same time, so to label it as one thing (when there may be more going on below the surface) can do the patient a disservice.
Instead, she advises anyone who believes they’ve recognised a possible mental health condition to arrive at their doctor’s appointment with a full written list of relevant personal information, past experiences, possible traumas and any medication they’re using. She also suggests booking a double appointment, ensuring that you have the time and space to comfortably open up about your lived experience.
But it’s not just getting a doctor’s appointment that can stop crucial diagnoses and treatment. Mental health stigma, an issue that affects young men in particular, can be an even more important accessibility issue. “It’s a big stigma in my house,” says 24-year-old Rob, who used the internet to self-diagnose himself with bipolar disorder, but has yet to approach his doctor to discuss treatment.
At 19, Rob started to recognise symptoms that he initially self-diagnosed as depression and later identified as bipolar. His dad suffers with bipolar disorder, meaning that the genetic predisposition for him to suffer with this illness was already there. As someone who uses weed to help put himself in a “better headspace” during low days, Rob believes that his mum would blame any diagnosed mental health condition on this: “My mum blames my dad’s mental health on drugs, so I wouldn’t be able to come home and tell her I’d been diagnosed with anything — she wouldn’t understand,” he says.
Rob also worried that his problems aren’t “severe enough” to elicit a concrete diagnosis, and has internalised mental health shame himself, citing a seminal, but very controversial 1970s study about the relativity of ‘mental illness’. Rob worries, he tells me, that the ‘stickiness of labels’ would lead to a lifetime of “unnecessary medication” and labelling. “I think a diagnosis would leave me with a lifetime commitment to mood stabilising drugs,” he says. He’s not looking to advance his self-diagnosis into an official one anytime in the near future.
While it’s clear to see that self-diagnosis has played a huge part in the mental health journeys of these young people, there’s space to be cautious — albeit persistent — while advocating for your own health. Doctors want us to be empowered in recognising our own symptoms, but they emphasise that, whatever the obstacles getting in the way of treatment, a formal diagnosis should always be the end goal. Kristen provides a useful analogy. “If you constantly had a headache that never went away, then you’d keep going back to your doctor,” she says. “If you went for a mental health reason and someone invalidated your experience, you’re likely to feel shame and to not go back. But I urge you, if your symptoms aren’t improving then keep going back. If your doctor is dismissive or insensitive then book to see a different one. Being informed is so important, but you’ve got to keep going and not give up until you get the help you deserve.”
*A pseudonym has been used to protect Rob’s identity.
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