Mental illness: the diagnosis dilemma

Jeevan writes about how inadequacies in mental health services have fostered a potentially dangerous culture of self-diagnosis online.

Content Warning: mentions of mental health problems and eating disorders

Recent NHS data reveals a cost of mental health crisis: a quarter of 17 to 19 year olds have a probable mental disorder, while 1.2 million people languish on waiting lists. With our health service gutted of the capacity to deal with increased demand, it’s inevitable that sufferers look to alternatives. The ever-encroaching ubiquity of the internet into everyday life means that conversations about mental health now often take place online, rather at the doctor’s surgery: TikTok videos accompanied by #mentalhealth had accumulated over 20 billion views by the start of 2022. But while frank and honest discussions, often undertaken by influencers, can nurture greater understanding of mental health problems, internet users have taken on another facet of the health service: diagnosis.

Sophie McBain describes the inherent dilemma both professionals and other individuals face when diagnosing: “The stricter you set the criteria for diagnosis, the more people you exclude from specialist support. But set the bar too low, and you label vast numbers of people as “disordered”, alienating those with more extreme symptoms.” My own experiences with both clinical and self-diagnosis have generally left me more confused and anguished. I’m on some sort of borderline in this dilemma: not diagnosed, but not inherently undiagnosable. Friends, family, my therapist, and yes, the internet, have posited that I potentially have several mental health conditions. But most of these conditions lack rigidity, and objectivity, in their symptoms. This means that diagnosis is up to interpretation, which is why you can easily conclude from one TikTok video detailing symptoms of a condition that you have it, and from another that you do not.

For me it started with google searches, and quizzes. Almost all of my friends who have been diagnosed with autism have suggested that I might also have it, from primary school age to those I’ve met at university. Their reasoning was mostly based on stereotypes, including my obsessive special interests (I had a collection of nearly a hundred maps in my bedroom by the age of 6), or how as a kid I’d flap my arms uncontrollably when I was excited. But these idiosyncrasies, for want of a better word, never really impacted my life other than creating distractions from my school or uni work, which is certainly not a unique or unusual experience. The internet introduced me to the concept of stimming – it’s why I wear hats around campus sometimes, to stop me pulling my hair out – but I was then reminded that my dad does the exact same thing, and I could easily have just picked this habit up from him. Google prompted symptoms such as struggling on phone calls (who doesn’t?), or with eye contact, but being bullied throughout school and lacking friends meant I was always going to be ‘behind’ socially. A diagnosis would be tenuous, and I probably only wanted one to stop hating myself for feeling ‘different’. 

I meet the criteria for other conditions more strongly. My therapist, while unable to provide a diagnosis herself, said that someone qualified would almost certainly find that I have OCD. I have obsessive and intrusive thoughts regularly, and in the past used compulsions to counteract them. But I was fortunate enough to spot the signs early, and that my family could afford to pay for me to have private therapy when they arose. Once I’d received coping mechanisms from a therapist, my intrusive thoughts were still unpleasant, but they no longer consumed hours of my days. The only reason for me to receive a formal diagnosis would be the satisfaction of having an explanation. 

This was still tempting: a diagnosis would have provided validation that my suffering wasn’t my fault, and that my brain was just ‘wired’ differently. Without an explanation for symptoms, you cannot start a process of meaningfully eliminating their causes, just as without a clinical diagnosis, you cannot usually receive clinical treatment for it. But whereas in the NHS, qualified professionals provide information to patients, on a social media platform, users disseminate information among each other. Where undertaken online, the question of diagnosis is outsourced to the recipient of the information, rather than the provider. This is not to say that all instances of self-diagnosis have no credibility, or that professionals always get it right. But self-diagnosis should be no more than a last resort, because it provides no more than an explanation, no basis for prescribed treatment, nor a guarantee of accommodations (such as extra time in exams) by universities or workplaces.

It is unacceptable that online self-diagnosis is now the only resort for many people, but it is also counterproductive. Physical and mental health are inherently linked, and without initially going to see my GP after a bout of depression and anxiety, the subsequent blood test would not have revealed that the cause of this was actually hypothyroidism. But while this was diagnosed straight away, waiting lists for mental health problems are so long that diagnosis for them is now only realistically possible to those who can pay for it. Towards the end of last academic year, I frantically called the GP after another evening of binge eating, followed by leaning over the toilet, hand in mouth. My weight was still normal, as is often the case for those with bulimia, so rather than receiving a diagnosis, I was given a list of charities to reach out to. All I could do was self-diagnose. Neglect (and, post-2010, the deliberate decimation) of mental health services by successive governments has led to the deprofessionalisation of diagnosis, and the devolution of the intermediary platform on which it often occurs to big tech companies. People now ‘self-regulate’ each other’s mental health problems on a commercial platform, whose creator profits from it.

This is not just inequitable, but dangerous: social media platforms are conducive to the occurrence of self-diagnosis, and the problems requiring self-diagnosis. One study of teenagers found a directly negative correlation between time spent on social media and life satisfaction, and sometimes, harm and help are found on the very same webpage. The inquest into the death of 14-year old Molly Russell found that she actively sought comfort from the harmful content available to her online. When I was bulimic, I was so close to ordering laxative pills to my halls, because it was that much easier to hide my shame behind a computer screen, and there was no professional or staff member to question what I was doing. The overarching problem with online mental health content, and why influencers can never become direct replacements for medical professionals, is that it is unregulated.

Molly Russell repeatedly tried to reach out to a mental health influencer, Salice Rose, in the months leading up to her suicide. Inevitably, her efforts to seek help online were inadequate compared to the help that a trained professional could have provided. This is not to blame social media users, such as Russell, or influencers, such as Rose. In Estates: An Intimate History, Lynsey Hanley emphasises how “people fight themselves or each other, rather than the system, simply because it’s easier and there’s an obvious way to do it.” A fundamental rethink of the structures dealing with mental health in this country may be more difficult than scapegoating young people, but it is urgently necessary.

However, simply giving the NHS more money to provide mental health services within its current structures is not an all-encompassing solution. There is still an unacceptable prevalence of misogyny and racism in the NHS which, among other factors, leads to misdiagnosis and underdiagnosis. The NHS was designed to cure problems, rather than care for them, but it is care which many longer term and chronic mental health problems require. For her book Radical Help: How we can remake the relationships between us and revolutionise the welfare state, social activist Hilary Cottam set up an experiment called Wellogram, which involved taking people with chronic health problems outside of the NHS. Instead, they worked side by side in group settings to set goals and support each other to stick to them. 75% of those that smoked quit, while 44% lowered their blood pressure. 

Wellogram was effective because it utilised our propensity to connect over shared experiences. The principles of mutual understanding and solidarity, which make online mental health communities so good at destigmatising mental health problems, were applied in a less toxic setting: one that is not also filled with harmful content, nor dictated by hashtags and algorithms. Programmes like Wellogram show that a non-medical approach to treating mental health problems can be done effectively and professionally, while remaining inclusive of those like myself who are on the borderline of diagnosis.

An unacceptable dichotomy has come to represent the state of diagnosis in the UK. NHS mental health services are too dysfunctional for everyone needing a clinical diagnosis to be able to obtain one, but loosely regulated social media platforms contain too much harmful content to replace them safely. While it is impossible to stop people from self-diagnosing online, high quality clinical and non-clinical systems of professional support must exist as alternatives, so that people struggling with their mental health – with or without a clinical diagnosis – are not left to their own devices. It is infrastructure, not influencers, that will stop the mental health crisis in young people from ballooning further out of control.