It’s like clockwork. My Twitter timeline regularly contains references to what people who receive psychiatric treatment should be referred to. I think it’s time to write the ‘label post’ again.
For me, it’s started with the tweet by Allen Frances
I prefer to go even further:
'A patient who meets criteria for schizophrenia'.
'Schizophrenia' is just a construct- not something you can have. https://t.co/RXiu1MVQUR
— Allen Frances (@AllenFrancesMD) September 12, 2020
who responds to a tweet suggesting that there are no ‘schizophrenic patients’, there are ‘patients with schizophrenia’. To this Frances says: I prefer to go even further: ‘A patient who meets criteria for schizophrenia’.
Is Dr Frances right? Of course, he is. Have we now found the best way to talk about patients in mental healthcare? Not even close. All those discussions are not more than irritating; lip service paid to incessant and largely irrelevant debates on language in psychiatry, all justified by the ‘language matters’ slogan. And all, again, serving no particular point or goal.
Incidentally, it’s worth reading the responses under Allen Frances’ tweet. Some people cheer and agree, some still are unhappy with the label being ‘slapped’ onto a person. After all, if you use the word ‘schizophrenia’, you’re using ‘the label’ and that’s bad. After all, we must consider the questions whether mental illness exists, as discussed by another website I’ve never heard of. Needless to say, Dr Frances’ point that schizophrenia is only a construct not a ‘real thing’ doesn’t matter, after all he’s a shrink, so he must wish you ill.
I do despair…..
Let me repeat: I consider such discussions pointless and moot. Yes, there are certainly people who think that they are important, they find being called ‘patient’, or even the use of words such as ‘schizophrenia’ offensive. But there are also people who don’t mind, in fact, there are people for whom such ‘labels’ are important, useful, and are used to build at least part of the person’s identities around them. Can everyone win? No, of course, they can’t. Both standpoints, together with a spectrum between them, are valid. And you can continue arguing till you’re blue in the face. Incidentally, as I don’t think any compromise is possible, I think it’s better to move on.
The second reason why I find those discussions irritating is because of the arguments that the preferred label reflects the true nature of things. So, we discuss them to hone our description of true reality. Such arguments are nonsense. Each language use, including those damned labels, carry a host of ideological assumptions and people choose those labels because of those assumptions, regardless of whether they are aware of them or not.
Finally, such discussions consistently assume that the change of phrases (labels) will result in a changed reality. Eternally happy people will live in a world of everlasting peace from the day of the change day onward. Needless to say, nothing of the sort will happen.
In fact, let’s imagine that tomorrow the WHO changes, for example, the label ‘borderline personality disorder’ (I must admit that I find the ‘personality disorder’ labels particularly unhelpful and problematic) and calls it, let’s say, for the sake of argument, ‘behavioural pattern A’. What exactly would change? Would any psychiatrist behave differently? Would the any health service change anything? Would there be different recommendations? Would the attitudes towards patients change (on many occasions I heard psychiatrists admit that they don’t like BPD patients)? I’m afraid not. Nothing would change. In fact, I think that ‘behavioural pattern A’ would at first be identified as ‘former BPD’, and in time it would become as stigmatising as BPD was. In fact, this is precisely what history of psychiatry teaches us. Psychiatry can be seen as a history of label change. And what happened? Nothing. Zilch. Nada. The new phrases take on the stigmatising capacity of those which were replaced. And so, what exactly is the fight all about?
A reservation: we might still want to change BPD into BPA, but only because of the ideological baggage the former carries, or, simply, because we like it better. It creates a better picture of the world. And that’s fine. But the change will result in nothing that is claimed about it. Those diagnosed with behavioural pattern A will continue to be in a very undesirable situation. If you want to help them, stop thinking about language (and I do know many people really dislike me for saying this).
Now, let me offer a few more linguistic comments on the discussions about labels. Their significant weakness is that the discussants ignore the fact that they are not discussing dictionary entries, but they are supposed to be discussing the way certain people (patients, clinicians, administrators or, indeed, Twitter users) communicate. So, mostly, it is unclear what the discussions are all about. Let me give a couple of examples for what they can be about (the list is far from exhaustive).
1. Is the discussion about words referring to a group of people receiving healthcare? Just like we refer to doctors or nurses, we (probably) must have a way to refer to those on the side of the metaphorical (or not) stethoscope. As I said above, because of the diversity of people in psychiatric treatment, it is as unlikely as it can be, that there will ever be a consensus about how to refer to such a group of people. Someone will always be happy, someone will always be unhappy. Is there a point in discussing? In my view, not really. Will it stop the incessant debate? Hardly.
Do note that at this level, it’s pointless to ask people what their preference is, or that they should be called by their names etc. Here we are referring to an entire group of people. Like it or not, we need a label, be it because we need a way to say that there is a group of people who are entitled to social support, benefits, leave from work etc. etc.
And no, formulation (for some a strategy which will also cure cancer) will not be a way forward, we need some population-level criteria. Nor will be discussions whether mental illness exists or not. It doesn’t matter what your view is, if you can get, say, disability benefits because you suffer, you need criteria. Call it what you will, but you are likely to have to call it an illness, because in today’s societies, it is illness or disability that give you such benefits (with all their arbitrariness, ideologies underpinning, social constructs and what have you).
And I am yet to hear an idea how to deal with this.
My own personal view is that life is way too short to be bothered by it. I accept, however, that for some people it is considerably more important than it is for me. In a way, I regret this is the case. Yet, label change is extremely unlikely to bring out any change in practice. And while it is likely to make some people happy, others will be made unhappy.
2. The second context invoked by discussions is that of clinical interaction. This gets a bit more complicated.
I’ve been asked what I would like to be called only once. I said “Professor Galasinski” (I must admit I wanted to see what would happen) and the medic did not call me that even once. He avoided calling me anything altogether, which I think is very interesting, and worthy of a separate blogpost. In any case, I find such questions an imposition, there is no reason to ask them, clinicians should assume that normal social graces apply and should go for normal everyday formality.
In my view, doctors calling their patients by their first names take liberties and the only way to preserve a bastion of symmetry is when I call you by your family name and you reciprocate. Of course, I realise that I am still likely to call you using your professional title, still it’s better than nothing. Incidentally, over the years, I have tried to address doctors using “Mr” or “Mrs”, or ‘Ms’, and both doctors and, in particular, receptionists balked at that. I was immediately corrected. That in itself suggests how important forms of address are and that symmetry is only pretence.
Should doctors use illness labels? Well, the argument from the previous point applies. The issue is how you present this. I would imagine that simply saying: “you have schizophrenia” is unhelpful and insensitive. There are all sorts of ways in which to say this in an empathic, understanding manner, accepting that a person might reject such a diagnosis.
Before I finish, I would like to end with a reference to a tweet from a person I follow on Twitter. She listed, among others, the following observations on her hospitalisation: no real therapy; uncaring staff; disgusting environments; boredom; intimidating ward rounds and others. Someone else, quoting the tweet, added: over-medicating; coercion, even assault; damaging power dynamics; seeing others in distress and others.
This is a pretty damning picture of mental health services, and psychiatric hospitals in particular. It’s also a picture I recognise. When I was doing research and visited a number of hospitals, there are still things I wish I hadn’t seen. For example, I have seen mindless and brutal coercion, I have seen open and cavalier lack of respect. And as I recall such scenes or events, I start thinking: are you for real? Are you really still arguing about what is the best way to call a patient? Do you really think that the patient whom two orderlies shoved a bottle into his mouth to wash the medication down, as they pinned him down on the floor with a knee, gives a single flying f….about what label you use to refer to him?
If you can afford wondering discussing the bloody labels, you must really think that everything else is just hunky dory. Psychiatric hospitals are those wonderful places where people are offered empathy, support, respect….., psychiatric consultations are communicative events of love and joy, while psychiatric medication is commonly regarded as happy pills. So, now you can wonder about the minutia like the labels.
For me, I still can’t get rid of an image which has haunted me for years. I was waiting (I can’t remember what for) in a closed ward, just mindlessly looking ahead, when all of a sudden, I saw a figure or a woman. She was dressed in heavy duty hospital pyjamas. She was heavily distended, so her belly was clearly seen as the trousers were tightly wrapped around it. She had long hair which was obviously unwashed for a significant period of time, greasy strips of hair on her front and back. But the most haunting were her eyes. Her eyes were empty, unseeing. Hollow. She shuffled her feet with effort, moving very slowly along the corridor. That young woman, drugged out of her mind into a psychiatric zombie, also didn’t care about what label was used to refer to her.
As this image keeps haunting me, I do refuse to engage with labels. And I really don’t care how many people think they are the most important thing psychiatry should deal with. They’re not, period.