Here’s a thought-provoking blog one of my favourite bloggers on Mad in America which I first posted on Recovery Stories in July 2014.
‘I was taught in medical school and psychiatric residency not to talk to people about their voices and their delusions: “It will only feed into them and make them worse.” Nor was I supposed to argue with people with paranoia because they’ll just get agitated and won’t change their mind anyway.
We were taught that the psychoanalysts had wasted a lot of time trying to connect people with psychosis by trying to find meaning in their psychosis. I was taught that there is no meaning. All we needed to know about their psychosis was enough to prescribe medications and assess if the meds worked. The venerable Chestnut Lodge where Frieda Fromm-Reichmann had treated the woman in “I Never Promised You a Rose Garden” with psychoanalysis was successfully sued for not providing research-proven meds instead of talking with patients with psychosis.
Beyond that, I was told not to try to relate to the patients in the State hospital because they couldn’t handle relationships and when I left they’d feel abandoned and decompensate. Most of my medical school class mates were more than happy to follow that advice and left the ward as fast as possible. They already knew that “people with psychosis are creepy and frightening and frustrating anyhow” without having met any of them.
But what happens if you don’t talk to people with psychosis and just medicate them? Sometimes their psychosis gets somewhat better, but usually they’re stuck with disabling “negative symptoms”. They’re emotionally blunted, slowed, poorly motivated, disinterested, withdrawn, etc. I was taught I had to wait for a new medication to be developed to help those symptoms because the current ones didn’t help much. Talking to them was a waste of time that should be spent on “high-functioning” patients instead.
The other thing that happens sometimes if you don’t talk to people with psychosis and just medicate them is that they get less psychotic and can’t adjust to their sudden change in reality. In the early days of the long acting antipsychotic injections the British Health Service, public nurses went out into the community making sure their patients with schizophrenia got their shots. Unfortunately quite a few of their patients killed themselves.
Initially they wondered if increased suicidality was a side effect of the medications, but they eventually decided that their patients had killed themselves because no one had helped support them to come to terms with what they’d been going through, the losses they’d suffered, the internal and external stigma, and, putting it bluntly, how to go on with life after realizing they’d been diagnosed with a mental illness and medicated.
Several decades later some people noticed that adolescents diagnosed with major depression and given antidepressants are more likely to be suicidal too. We wondered if increased suicidality was a side effect of the medications and put a black box warning on them.
By this point we’ve become so obsessed with medications we never asked if they too killed themselves because no one had helped support them to come to terms with they’d been going through, the losses they’d suffered, the internal and external stigma, and, putting it bluntly, how to go on with life after realizing they’re diagnosed with a mental illness and medicated. Most antidepressants were handed to them by a primary care doctor after a cursory visit or maybe a depression screening. No one spent time talking to most of them.
It can take “two to avoid”. Most people don’t want to spend time talking with a mental health professional about their “symptoms” either. Some of this is because of the way mental health professionals act, but most of it is because it’s unpleasant to really talk about painfully distressing mental and emotional challenges. “Can you just give me my pills and let me get out of here as fast as possible?” is a common treatment request and plan even though it’s not very effective.
Some people don’t perceive themselves as “mentally ill” or “psychotic” or “symptomatic” in the first place. They’re likely to avoid talking with mental health professionals who insist on putting their experiences into those categories and try to find someone whose perspective is more similar to theirs to talk with instead.
Over my career I’ve heard about several promising developments for treating psychotic people – CBT for psychosis, peer support, dialogic therapy, and “voice hearers” – but none of them ever get used much. Why? I think that one of the reasons is that we’d have to actually talk to people with psychosis, usually in depth about their individual experiences of psychosis, to use any of those techniques and we’re unable to or simply refuse to do that.
Think about it for a minute. How are we going to help people develop more positive ways of thinking about and interacting with their voices without talking in detail about how they think about and relate to their voices now?
The CBT approach requires going back to the earliest moments of psychosis to see how personal experiences emerged. How are we going to support someone as a peer without sharing details with each other that demonstrate true understanding and empathy? How are we going to make a dialogue with someone while purposefully ignoring the most compelling experiences they have? And how are we going to help people adapt to voices as part of their identity, and even help some people develop personal understandings of what they’re going through without using psychiatric terminology – including “psychosis” – without getting into personal, subjective detail?
Maybe, just maybe, we have to learn how to talk to people about their psychosis if we’re going to help them recover.
Let’s think about the Wunderink study again with the assumption that talking to people about their psychosis might be very important, instead of assuming it’s irrelevant. My understanding is that in that study, they took a group of people with schizophrenia who were stabilized on their medications and divided it in half. One half was instructed to stay on their medications at their current dosage indefinitely to stay stable. The other half was supported in lowering or even coming off their medications if possible.
Although only a fraction did succeed in getting off their medications and that group had more relapses in the first six months than the maintenance group, but by one year the groups were evening out and by two years the dosage reduction group was doing better than the maintenance group. Also, after two years far more people in the dosage reduction group were working than people in the maintenance group was.
Let’s imagine for a moment how the conversations about psychosis that the two groups likely had. The maintenance group likely was handled in the customary way, checking their symptoms and side effects in perfunctory med visits while refills were written indefinitely. By contrast, the psychiatrists in the dosage reduction group probably had to keep talking about symptoms in some detail to decide whether to keep reducing meds or leave them alone or raise them back up. Over time they likely trained their patients to observe their symptoms in some detail to avoid repeating all those early relapses and to make better medication decisions.
I can imagine how those medication conversations over time led to people being more observant of their own symptoms, learning what helped and harmed them, learning when medications did and didn’t help, all the while gaining some mastery and control over their symptoms and indirectly their lives. Maybe they did better and better, not because of a biological reason, but because they were learning to come to terms with what they’d been going through, the losses they’d suffered, the internal and external stigma, and, putting it bluntly, how to go on with life after realizing they’re diagnosed with a mental illness and medicated.
Meanwhile the maintenance group just went on passively depending on their pills to stay well, and that worked less and less well over time.
Maybe, just maybe, how we talk to people about their psychosis is really important.’
I, for one, certainly do believe it is important.
