The mental health boom seems to have done nothing to benefit people living with severe psychotic disorders. Suffering from schizophrenia or paranoia definitely isn’t glamorous. We’ve certainly broken the taboo about anxiety or depression — some authors even argue that we’ve gone too far, to the point of recasting any suffering that’s inherent to life as being attributable to a disorder — but social stigma still surrounds those who hear voices, develop delusional ideas, or have disorganized thinking.
It may seem that psychosis affects very few people, but for instance, in Spain — a high-income country with a population of 48 million — nearly half-a-million people have been diagnosed with schizophrenia. And, according to the WHO, this mental condition is the third cause of disability in young people. While it’s true that some singers or writers have recounted their individual psychotic experiences (oftentimes associated with drug abuse), their highly-successful lives are, unfortunately, not representative of those who deal with this.
Psychosis usually begins in adolescence and encompasses a series of very diverse disorders, both in their clinical presentation and course. One thing they have in common is that, at some point, the patient loses their sense of reality, experiencing delusions (false beliefs experienced as irrefutable truths) and hallucinations (perceptions without real external stimuli), typically via voices that insult them or comment on their behavior.
After the first psychotic episode, some patients demonstrate marked apathy, lack of vitality and social withdrawal — the so-called “negative symptoms” — which lead to a general deterioration in functioning. There are, therefore, symptoms that are typical of psychotic relapses, as well as prolonged and limiting symptoms that are characteristic of the chronic phase.
Treatment should be comprehensive (pharmacological and psychosocial) and received as early as possible. However, it must be taken into consideration that recovering from a psychotic experience isn’t so simple, nor is it comparable to rehabilitating, say, a fracture.
How does a 19-year-old teen accept that what he has felt and experienced firsthand during the past few months of his life actually represents a disorder that has significantly altered his perception of reality? How does he accept that it’s going to be extremely difficult for him to carry out daily activities, or that he must receive long-term treatment to avoid relapses? Indeed, for many of those affected, the effort required to counteract this disorder is too much to bear. Between 5% and 10% of people diagnosed with schizophrenia die by suicide, while 40% attempt it.
Psychotic disorders are caused by an extremely complex gene-environment interaction, in which numerous external factors — among which trauma and the use of toxins, such as cannabis, stand out — affect vulnerable individuals, giving rise to symptoms that professionals attempt to diagnose and treat. Their goal is to reduce the intensity of the illness — as with other medical conditions — so that the patient achieves the best possible quality of life. But this approach, while necessary, isn’t enough.
There’s a complementary approach based on helping the person lead a dignified, meaningful and purposeful life, despite the undeniable limitations imposed by their disorder. This is called the “psychosis recovery model.” Since the 1990s, it’s been in vogue within psychosocial rehabilitation forums. However, this approach has yet to be translated into reality in many places.
What does this model consist of? Well, it recognizes that nobody recovers alone: isolation and seclusion are harmful. Rather, people need to be surrounded by empathy, validation and reciprocity. The recovery model deliberately fosters hope for progress, believing in the patient’s potential, despite the uncertainty of relapse. The Pygmalion effect — or the self-fulfilling prophecy — acts here as it does in education: the teacher who believes they have bad students will end up having them. This devastating vision of schizophrenia must be banished, along with the therapeutic nihilism that it entails. The focus must be on helping the disoriented 19-year-old believe in himself again and establish meaning and purpose in his life.
This model — sensibly — doesn’t deny the existence of the disorder, nor the need to treat it. Instead, it considers that there’s something important behind the condition: a person, with a first and last name. They have a story, a family, hobbies, beliefs and unique characteristics. This child must be able to take control of their life and feel strong again.
As professionals, we can facilitate this process by offering a comprehensive, multidisciplinary plan, in which the patient feels truly involved. We can incorporate a model of shared decision-making that respects the principle of autonomy and involves a therapeutic agreement. Although there may be times when the patient’s judgment may be compromised, for the most part, their decisions and preferences must be considered and respected. Medication — while essential for the vast majority of patients — is a tool, not an end. Its dosage must be individualized and adjusted to the minimum effective dose, prioritizing quality of life above all else. But these efforts by professionals will be of little use if the patient’s basic needs — such as employment and decent housing — are not met.
For the young man suffering from a psychotic disorder, a job would provide structure, self-esteem, learning and income: it would be good for his mental health. Are we going to finally promote protected employment and access to the labor market for people who are living with disabilities, due to serious mental illness? Likewise, there’s much room for improvement in providing assisted living and mini-residences that are integrated into local communities, so that these people can live with dignity and independence.
The recovery of those suffering from psychotic disorders depends, in part, on what the rest of us do. Imagine if — instead of following a successful influencer — we followed the titanic and secret feat of that 19-year-old, who is trying to become himself again?
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