Who gets to define suffering? Even psychiatry is less sure

Ten labels, and only one ever talked through with me. Even one of psychiatry's defenders concedes diagnoses can't rest on objective facts. So who decides?

I’ve been given ten psychiatric labels over the years. Only one of them, depression, was ever talked about with me, and even that only to a point. The other nine went into my notes and were never mentioned. What we talked about in appointments was how I was feeling. The labels were written down somewhere else.

So what exactly are they meant to define? And who gets to decide?

It turns out that second question is now being asked inside psychiatry itself.

Psychiatry’s critics were right, and some psychiatrists now say so

For decades, people like Lucy Johnstone, James Davies and Joanna Moncrieff have argued that psychiatric diagnoses aren’t scientific facts. They’re shaped by social values, professional negotiation and culture. Too often, psychiatry’s answer has been to call them “antipsychiatry” and accuse them of denying that people suffer.

In June, the psychotherapist James Barnes wrote a piece for Psychology Today called Who Gets to Define Human Suffering? It’s about an essay by Awais Aftab, a psychiatrist and philosopher who is one of psychiatry’s more thoughtful defenders. In The Ground Beneath the Clinic, Aftab writes:

“I take it for granted that the project of defining the authority of medicine and clinical disciplines in terms of disorder concepts on the basis of objective, value-free facts has failed.”

In plain words, as Barnes reads it: psychiatric diagnoses aren’t things you find in nature, the way you find a broken bone. Aftab still thinks psychiatry has a place, because people suffer and need help, and he accepts there’s more than one way to understand distress. Barnes thinks he doesn’t follow that through. Once you accept the categories can’t rest on objective facts, psychiatry is one way of making sense of distress among many. Relational, social, political and community ways of understanding it stand on the same ground.

Barnes puts it this way. Critics “no longer need to explain why they reject psychiatric concepts; rather, psychiatry must explain why it should continue to exercise medical authority in the absence of the foundations that once justified that authority.”

The label shapes what happens next

This isn’t theory. Barnes writes: “Psychiatry does not merely respond to suffering; it actively participates in defining it.” The label shapes what you’re offered, which service you’re sent to, and how people see you after.

In August, the Royal College of Psychiatrists published a position statement on adults who were sexually abused as children. It was written with survivors, and some of what it says about diagnosis applies far more widely.

It says the way mental health conditions are categorised “is socially and culturally informed”. It lists “misdiagnosis and the attachment of labels that stigmatise” among the harms services have caused. In its section on harm to survivors, it says “restrictive and potentially punitive practices” are more likely when people are given diagnoses such as emotionally unstable personality disorder. And it points out that NICE guidance says that diagnosis can be made on “a standard clinical history or impression alone”.

An impression. That’s enough to put a label in someone’s notes that can change how services treat them from then on.

The statement quotes survivors. One said: “It was very much all ‘What is wrong with you’ not ‘What happened to you’.” Another: “I have had many consultant psychiatrists and each one just gave me yet another irrelevant label.”

That last line I recognise. Different doctors, another label each time. Almost none of them were explained to me.

Dr Lade Smith, the College’s immediate past President, said survivors deserve trauma-informed support, and added: “I am sorry that too often this has not been the case.” The BMJ reported it as an apology for failures of care over many years.

What the College now calls for is “trauma-informed, biopsychosocial formulation-led care”. In plain words, that means making sense of someone’s difficulties in the context of their life, rather than starting from a label.

A label isn’t the same as being understood

I’ve written before about why diagnoses hang on, and why some people find real relief in one, in Needs, not labels. That still stands.

But feeling relieved by a label doesn’t make it a fact about you. And the nine labels nobody explained did nothing for me. They just decided things about me without me. I’ve written about what that cost my physical health in Same label, different needs.

What this means at work

At work, nobody should be waiting for a diagnosis before they help. Managers don’t need to know what someone’s label is. They need to know what’s going on, and what would make work possible.

That’s how I train mental health first aiders, and it’s far from the standard approach. A lot of first aider programmes are built around being available. There’s a name on a poster, and the person in crisis is expected to come forward. In my experience, plenty never do.

I teach first aiders to notice first. The colleague who’s gone quiet, or stopped coming for lunch. Then to start the conversation themselves, instead of waiting to be asked. They never diagnose. Most of what people bring into work is what they’re carrying, not something wrong with them, and you don’t need any authority to ask about it. I also expect them to look at what in the workplace might be making people unwell, not just respond once someone is struggling.

Ask what’s going on. Ask what would help. You don’t need personal details, just the gist. If someone wants to say more, that can be another time, or somewhere away from work where it feels easier to talk.

Neither question needs a diagnosis, and nor do the conversations that follow. If someone chooses to tell you about one, and wants help with it, you can point them back to whoever diagnosed them. If that was a long time ago and they’re no longer seeing that person, their GP is the place to start.

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