Self-Diagnosing Mental Ill-Health

I am a habitual self-diagnoser. I’ve thought I had polycystic ovary syndrome (PCOS), appendicitis, diabetes, hernias, at least three different kinds of cancer, and COVID-19 galore. Still partially convinced I have OCD, a hypersensitive nervous system, and an incorrigible case of maladaptive daydreaming—the latter of which, I’ll clarify, is not currently recognised by the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the World Health Organisation (WHO). 

To the hypochondriac, diagnosis is an addiction. Every time I find an explanation for any odd symptom, it hits like giddy adrenaline. A shot of dopamine coupled with the possibility of connection. Except for the poor bugger who first got COVID-19, humans are rarely harbingers of illness. Somebody somewhere has had what you have, and hey, it’s great to have something in common. After all, unnamed, formless monsters are far more frightening than Bob the Anxious Brain Gremlin. (Fuck you, Bob).

Heading down the analysis rabbit-hole, as it turns out, is a coping mechanism. Both my therapist and mother, a registered nurse, have made this abundantly clear numerous times, often out of the utmost patience for 

my neurotic questioning. Nowadays, I simply need someone I trust to clarify reality so that I feel safe and in control. Is this normal? They can tell me yes, no, with qualifications.

But my experience is one of relative privilege. Not everyone has health insurance, or easy access to qualified, sustained healthcare for chronic illnesses like mental ill-health. Not everyone (with good reason) trusts doctors to do right by them. And one of the many side-effects of social media, for good and bad, is the quick candour and lack of censorship given to people of all lived experiences. We’re talking about mental ill-health now more than ever. What it looks like, feels like, how to cope and how to give care. All things up, we have an environment that clues people into questioning symptoms they may not have otherwise, and drawing their own conclusions.

Self-diagnosis isn’t inherently bad. A lot of good can come from paying attention to your body and what feels right for you. Seeing yourself in the lives of others can provide you with vocabulary, community, and clarity. People have realised they’ve been living on the autism spectrum without help, or that others like them struggle with the same obscure phobias, compulsions, and shames. Identifying with a Tumblr post about PTSD or joining a Facebook group for gender dysphoria can help you feel understood and like you belong. As Andrew Solomon once wisely surmised, there is no such thing as the placebo effect with mental illness because it’s an illness of the mind. If the treatment makes you feel better, then it’s worked because you feel better.

But—here comes the big however—we’re not all doctors. Not everything on the internet is true. People under- and misdiagnose themselves all the goddamn time. That time I thought I had appendicitis? Constipation. Blood cancer? Anaemia. When I thought I’d stop breathing if I didn’t ‘manually’ control every breath? Plain ol’ anxiety. (Fuck you, Bob). For every Tweet from a person legitimately realising they have OCD, there are many more asserting that their vague (and currently justified) fear of germs holds as much water as a thoroughly-tested, psychologist-approved, bonafide medical diagnosis. Mental illness is serious business, and deserves to be taken seriously by professionals. I promise you, Aunt Karen’s bad experience at Macca’s did not give her PTSD. To say otherwise trivialises the story of every survivor.

More caveats: not all assertions are disingenuous, and many posts can be legitimate cries for help. There are so many valid and nuanced reasons why someone might keep their diagnosis to themselves or online, wary of seeing a doctor or unable to access one at all. The pandemic, like many things, revealed a startling lack of trust in our society—of each other, our media, and relevantly, healthcare. The latter depends entirely on lived experience. Black, brown, Indigenous, Queer, trans/nonbinary, female, and fat bodies undergo staggering rates of under- and misdiagnosis by healthcare providers. Fat women are consistently told to lose weight when they’re in dire need of something else, such as counseling for surviving sexual assault. Black people, particularly Black women/femmes, are frequently undertreated for pain (and one need not mention the many, many times, as recently as 2020 in South Africa, that Black bodies have been used for shady clinical research). Indigenous Australians, particularly Aboriginal men, have enragingly high rates of suicide. Trans and nonbinary people consistently find themselves having to convince doctors of their own identities, let alone that they might have an unrelated illness. In these cases, doctors, if they show up at all, tend to miss the flames for the smoke pouring from the house fire. They also spend a good deal of time, it turns out, focusing on the make and model of said house to determine if there even is a fire. The point being: racism, sexism, homo/trans/fat-phobia, and classism all compound how society views and treats you, in every aspect. So even for the people who genuinely need help, they often don’t get it, or don’t receive the quality of help they deserve. And that guts me. 

In all fairness, the vast majority of medical professionals, my mother included, become so because they have empathy and education, and they care. 

That is hard to undo and requires action to work against. For many people living with the traumas they’ve inherited just from living as themselves, access is already an act of faith. Once we show up, we’re asked to trust someone (who frequently looks like the enemy) to treat us as human. It’s a big ask. What a mess. What a terrible let down. 

Add to that all the influencers, from TikTok to Instagram, taking advantage of vulnerable people, especially minors from the aforementioned identities, by participating in challenges that misdiagnose, misinform, misguide, and misconstrue. Instead of amplifying resources, these influencers present themselves as the resource. Put a finger down, ask the influencers, if you’ve had any symptoms, as they try to ‘raise awareness’ by showing how universal the signs of illness are. Put a finger down if you’ve felt like an imposter, worried excessively, had trouble getting out of bed, felt unworthy, lost, or unloved, regardless of reality. I guarantee we’d all put at least one finger down. (And I’ll raise one up in response to those influencers and their ‘activism’).

The mess seems irrevocable, and inextricable to how we’re living. But, if I may put my own diagnosis skills to the table—and without question, I’m no expert—it seems to me that at a fundamental level, we all suffer collectively from a dearth of control. 

Trust is an act of surrender. You have the power to hurt me, and I am giving you that power out of faith that you won’t abuse it. There is no greater vulnerability than sitting alone in that white room with someone who may potentially see you for who you are and what you’ve survived. Add to that the shame of ill-health: the terror of feeling broken, that we’ve failed to thrive on our own terms, that the doctor will make real what we’ve only suspected until now. After all, without an official diagnosis, it’s easy to pretend that we may not be sick at all. Or if sickness provides a comfort, a scapegoat for all the ways in which we feel inferior, a means to consolation and connection, then an accurate but different diagnosis destroys our sense of safety. In all cases, we lose control.

And humans need to feel in control. We need to feel safe. Trauma is the unraveling of those fundamental needs. It’s a fear of powerlessness and failure, of dehumanisation. Nobody deserves to feel that way, like they’re just caught in a cosmic pinball machine, vulnerable to any random attack on their person and sense of self. And doctors can be the worst of it: they have power over life and death. They open us up and mend our wounds, confirm our worst fears and greatest dreams. They can control our own reality. Self-diagnosing eliminates this white-coated middleman and gives us a chance to regain that power. For people who’ve been abused by the system, asking them to give that 

power back to the doctors can feel like the ultimate insult. These are our bodies, after all. We deserve to govern them.

But even if you don’t know all the answers, I encourage you to pay attention to the fact that you’re asking the right questions. If you feel something’s wrong, if you don’t feel understood, you are worthy of help and feeling better. There are organisations devoted to regaining our trust and improving access, and a slew of good-hearted people on the internet ready to encourage you every step of the way. We don’t call it ‘battling’ illness for nothing: you have comrades in arms ready to support you in the war. Instead of completely demonising or dismissing it out of hand , I’d say