When I was at my lowest, three years ago, I had a phone call from a mental health nurse who wanted to book me in for an appointment with a psychiatrist. The nurse was unfortunately one of the least patient and empathetic people I’ve ever dealt with. At one point during the conversation, she told me callously that she was going to have to book me in for an in-person appointment instead of a call—because I was crying so much that a call wouldn’t be cost-effective for the NHS.
I never ended up seeing that psychiatrist, though I desperately needed to. I discharged myself from the service a few days after speaking to the nurse, despite the protestations of the hospital’s kind receptionist, who frankly deserves a pay rise. My discharging myself was partly the nurse’s fault, but it was also because I had developed a particularly insidious and corrosive new obsessive thought.
I had started to worry that I had previously been given the wrong diagnosis, that I didn’t have OCD and depression but some scarier mental disorder, such as a personality disorder or psychotic illness that might somehow make me a danger to other people. I felt I needed to evade mental health doctors in case they discovered it.
All my obsessive worries start with a grain of truth, and I believe this one stemmed from the fact that I do not match the conventional image of the severely depressed person, lying listlessly all day in bed. My behaviour is more akin to that of the 19th-century hysterical gentlewoman: my despair is agitated and dramatic, I pace and wail and rock; my inability to feed or care for myself is attributable not to malaise but to the fact that I am too busy fretting and doom-mongering to prepare a meal. Had I been born a few centuries earlier, I would have been shut away in a madhouse or sent to the seaside to convalesce (the latter of which is a treatment option I’m very open to).
A new and welcome debate is emerging about diagnostic labels: writers and academics are questioning whether they are a useful tool in assisting people in mental distress, or a means of stigmatisation and oppression. Two new books explore the racist, sexist history of psychiatry: Am I Normal? The 200-Year Search for Normal People (and Why They Don’t Exist) by Sarah Chaney and Mad World: The Politics of Mental Health by Micha Frazer-Carroll. Frazer-Carroll highlights the way capitalism plays a role in constructing diagnoses. “The difference between ‘ordinary distress’ and ‘mental illness’,” she writes, “is often defined by its impact on your ability to work.” Reading these ideas led me to reflect on my “wrong diagnosis” obsession and my internalised prejudice towards those who live with personality disorders or psychosis, who are often demonised as dangerous and are pushed out of the public conversation about mental health.
My own feelings about my diagnosis are complicated. Receiving a diagnosis of OCD was a moment of salvation for me—finally someone understood what was happening inside my brain, so maybe I could too. But being among the section of the population that's labelled clinically mad—as opposed to the rest of you, who live happily under the delusion that you’re any less bonkers—can be disempowering. And not all diagnoses are created equal; while OCD is often mocked, it does not carry the weight or stigma of other labels, ones that in my darkest moments I have been deeply afraid would be applied to me.
While the difficult project of reforming psychiatry will require long-term systemic change, an easy place to start would be to review the language that is used to describe diagnoses. I am appalled that, in 2023, doctors are still labelling patients—often those who have suffered huge trauma—as having “emotionally unstable” or “anti-social” personalities. Similarly, the word schizophrenia, which translates to “splitting mind”, has now taken on so many hurtful connotations that it’s surely time to retire it. Any diagnosis that shames a person is unlikely to help them engage with the care they need.
When I reflect on diagnostic language, I think of three young women who took their lives while receiving in-patient care at psychiatric hospitals in Middlesborough and Durham. A subsequent report in 2022 found a litany of failings, but what sticks with me is a line regarding the working diagnosis of “emotionally unstable personality disorder”, which was given to one of the young women. She did not like or agree with it. In years to come, I think it will be seen as one of the great cruelties of our time that our society’s most vulnerable people were given such unkind labels.
