Actually, the main selection criterion for the TED Talk is that you have to be slightly crazy. And I distinctly remember that I wanted to say something important about it, but I’m getting a little confused because, you sir, I saw you touching your glasses just now. Whilst at the same time, the lady over there was distinctly scratching her nose. I saw you… And there is something going on between the two of you, some sort of communication. And I distinctly get an impression that you want to ruin my TED Talk. Is that true?
So, maybe some of you start to worry a little bit about my mental health. And maybe after my TED Talk you want to take me to the local hospital for a psychiatric assessment.
Now, let’s imagine, I tell the psychiatrist that apart from these delusional thoughts I’m also hearing voices. And that I haven’t been functioning very well for the last six months. By telling this, I will meet, likely, criteria for one of these, so called “schizo” diagnoses. Let’s say I meet criteria for schizophrenia, which is the prototypical diagnostic formulation for madness.
Now, my family, by this time, will be notified of this diagnosis. And since they don’t know what it is, they will start looking on the internet, what this condition actually is. And they’ll look in the most prestigious scientific journals. And they find that I have a devastating genetic brain disease, or a debilitating neurological disorder.
So, now they start to be really worried. And they start looking for the information about my likely prognosis.
And they find that my prognosis is bad. I am totally disabled for the remainder of my lifetime. WOW! That’s scary, isn’t it?
But you will note that there is nothing in this terminology that actually allows them to understand, what is the matter with me. The information is disconnected from anything that we can understand as a mental function. What is offered is a stereotype, consisting of three things: A mystifying Greek name, an unproven hypothesis of a genetic brain disease and a hopeless view of outcome.
Meet my cousin Elizabeth. Elizabeth completed two university studies and is a witty and compassionate person, quite unlike me. And we were close, always. And we both ended up in psychiatry. However, me as a psychiatrist, and she as a patient. And over the last 15 years, she has worked very hard at her recovery — taking her medications, accepting numeral hospital admissions, and receiving a range of psychiatric diagnoses, including several of the “schizo” diagnoses.
And then, five years ago, there was this great moment, because she applied for a job and was accepted. But, when her employer found out about her diagnosis, he immediately tried to dismiss her. And when he found out he couldn’t, she was forced to disclose her diagnosis to the entire office. So nobody initially wanted to work with her.
But now, five years later, she has an exemplary work record. But because of the extremely negative expectations associated with psychosis, diagnosed people face an uphill struggle. A very few end up in paid employment.
So, why do I tell you this? Well, psychosis, schizophrenia, these are conditions that typically start in adolescence. There is widespread consensus that in order to recover from psychosis, you need a perspective of hope, a possibility to change. And I think, it is clear that the concept or the stereotype of psychosis as represented is devoid of exactly that – of hope and change.
So, can we do better? Well, a bunch of people got together, and this was really a mixed group of patients, professionals, relatives, and we asked ourselves the question: what do we really know about psychosis? Is schizophrenia really best represented as this stereotype of a devastating genetic brain disease? Or is schizophrenia something perhaps that is connected to human mental function, just like disorders of anxiety and depression are connected to human emotions? And if it is connected, can we reach young people to give them a message of hope and change?
So, to cut a long story short, let’s have a look at what we came up with.
[Video: Psychosis experiences. Everybody has them, and so do you. Throughout the day, we are exposed to stimuli that we hear, see, taste, feel and smell. Our brain helps us to transform this information into an image of the surrounding world. In other words, we translate external sensory information from our environments into an internal mental experience. Sensory translations are highly personal. For example, two people are walking through the woods at night. One watched a violent horror film earlier this evening, whereas the other did not. As a result, the one hears and sees rather different things, compared to the other. This is because powerful negative emotions, occasioned by the film, distort person’s interpretation of sensory perception. One can say, therefore, that this person is experiencing a mild psychotic event. Childhood adversities, cannabis use and genetic factors can trigger negative interpretations. This may cause you to feel that the world is full of threats. For example, you may start thinking that you are being stalked, or that people on TV are talking about you. Such ways of thinking are called delusions. You may also misinterpret your inner mental processes. For example, your thoughts can become so overpowering, that you interpret them as external voices or visions. As a result, you may hear voices or see things that are not really there. These experiences are called hallucinations. If perception of external environments or inner thoughts become psychotic, it is possible, with help, to learn, how to modify this. This is a learning process that many people with psychotic symptoms find profitable. PsychoseNet tries to facilitate this process. [Video ends]
So do you notice the difference with the presentation of the schizophrenia stereotype? Yet, this is what science suggests psychosis is about. There are four important points of difference here. What is psychosis? What is the role of the brain? What is the role of genes? And what is the prognosis of psychosis?
Psychosis is about, what you could say, hyper meaning. It is about that we sometimes attach too much meaning to the external environment. And seeing signals in random noise is actually quite human. So, experiences of hyper meaning are quite common. Think about being madly in love. Or being madly worried that your love is unfaithful. Or seeing a face in the dark. Actually, 30% of the general population, when asked, will admit to having had one or more psychotic experiences. Things like hearing voices or seeing things, mind reading, thought broadcasting, having special powers, low level, mild, but still all the things that are the mark of psychosis. 30%
So, I want you to look at the person on your left. And then look at the person on your right. And if it is not them, it is you. This is not to say that brain is not important. Brain is very important. But it is like learning language. Brain provides us with the biological capacity to acquire speech. But it is the early environment that programs this capacity, so that we speak Chinese, or English, or French, or Dutch. And it’s the same with psychosis. Our brain provides us with a biological capacity to have mental experiences in the first place. But it is the environment that can program this capacity towards psychotic modes of thinking.
People growing up in circumstances of childhood trauma or un-safety or extreme exclusion have a higher risk of developing psychotic symptoms. This is because these environments can program our thinking towards the formation of psychotic symptoms.
Genes do play a role. Genetic factors are important. But their role is not nearly as dominant, or as specific as is often portrayed. And, importantly, genes may act in ways that are complementary to the environment. By making people more or less sensitive to the environments that cause psychosis.
And, with regard to the outcome, some people, indeed, with psychotic symptoms, have a very severe illness and a very poor prognosis. But this is a minority. There are also people with the diagnosis of schizophrenia, who show complete recovery. And, between those two extremes, is a wide spectrum of variations. In fact, extreme variation is the rule. The notion of extremely uniform poor outcome is a myth. Psychosis is something that varies from day to day, even from moment to moment within a day. And it is capturing this dynamic pattern of variation in response to the environment and the emotions that is key to treatment and diagnosis.
So, if psychosis is all about hyper meaning varying during the day in response to the environment and emotions, the remarkable opportunity presents itself. And this is because we can now diagnose psychosis at a level of the experience itself, in such a way, that it becomes the first step towards treatment. Without a need to invoke the scary “schizo” labels.
And since young people are well versed in technology, why not use technology to empower them to track and monitor their experiences themselves, so that they can gain an insight and get a grip? To this end, our group developed this simple mobile app. The purpose of the app is that it allows people to monitor their mental states and their experiences in daily life, feeding that information back to them, so that they can learn and cope.
So, this app actually works as follows. At multiple times during the day, at random moments, the app gives off a signal, and each time there is a signal, very briefly, people are asked to input information. Less than two minutes. Information about emotions, and thoughts, and context, and activities. With this information, patterns of vulnerability and resilience can actually be made visible.
People then have access to the experiences of hyper meaning, as day evolves, in the flow of daily life, in response to emotions and environments, allowing them to actually understand what is going on, and allowing them to develop better ways of coping. In clinical practice, we find, this works very well, particularly with people in the early stages of psychosis.
So, where does all this leave us then? Well, today is about reaching the impossible. I think, it is, in fact, much simpler. I think, that nothing stands in our way to make today the first day that we can all feel connected to psychosis. Because it is all a question of perception. When we see a person with psychotic symptoms, we can, with a little effort and information, and, particularly, education, not see the stereotype of a devastating brain disease, but instead see a person who is struggling with the way we attach meaning to the internal and the external environment.
And this is, sometimes, a difficult and a painful process, but we are all experts.
