My son has schizophrenia: the rock of religion provides no solace and neither does the hard place of science

By Fiona Rose

Fiona is a management consultant and mother who writes candidly about the challenges and realities of mental health. Drawing on personal experience, she shares the journey of supporting her son through schizophrenia, navigating both the medical system and the emotional toll it brings. Fiona is a real person but this is not her real name.

Editorial note: In the UK, being “sectioned” refers to being detained under the Mental Health Act 1983 (as amended in 2007), meaning that a person can be legally admitted to a psychiatric hospital against their will if they are considered a risk to themselves or others due to a mental disorder.

My son has been in a mental hospital for about a year. He was sectioned and returned to a psychiatric intensive care unit (PICU) towards the end of March 2024, having lived with me for a year before that. He's in his early 30s, and has been “unwell” for most of his adult life, plagued by voices in his head. As he became unwell, the voices made him unpredictable and impulsive, unable to stick with things including his A level exams. He moved between casual jobs and became nomadic, living in a converted van. There was a spell of creativity when he wrote, recorded and performed music with friends, but that spark fizzled out many years ago. He's not been in paid employment for a decade and volunteering at a charity shop stopped three years ago.

His medical diagnosis lies somewhere between paranoid schizophrenia and schizo-affective disorder, and treatment is pharmaceutical. He’s been on at least five different anti-psychotic medications, and is now described as having “treatment-resistant” schizophrenia (TRS). Essentially, the drugs dampen the voices which taunt him during every waking hour but they're not a cure. Heavily medicated, he has at least functioned in society in some basic ways without harming himself or the people he’s lived with.

As a mother, I have found it devastating to witness his happy childhood morph into turbulent teenage years, followed by a completely dysfunctional adult life. This raises many questions for me as a humanist and a scientist. Trying to care for my son continually confirms my belief that there is no merciful (or otherwise) God. Stephen Fry’s response to Irish TV host Gay Byrne’s question about meeting God at the gates of heaven in an interview on RTE in 2015 rings in my ears: “Bone cancer in children? What’s that about? How dare you! How dare you create a world where there is such misery that is not our fault! It’s not right. It is utterly, utterly evil. Why should I respect a capricious, mean–minded, stupid god who creates a world that is so full of injustice and pain?” Well, I know all about that.

During his hospital incarceration, the voices in my son’s head convinced him to refuse to take the only drugs that actually work. In his deluded mind, he believed they would make his arms rot and wither away, poison him and destroy his stomach, and make his intestines stop working. Sometimes called “command hallucinations”, the voices are all-powerful, terrifying and absolutely real to him. He has had weeks of abject terror, screaming and weeping in his room; he has had phases of threatening ward staff and other patients; and there have been phases of catatonia where he retreats into a coma-like state, and is like a zombie. He became so “difficult to manage” that for several weeks he was kept in seclusion, locked in a bedroom on his own – a prisoner of the tormenting voices – and only allowed out briefly into a safe area in the ward, escorted by two burly nurses, who were ready to restrain him if he lashed out.

These days, my exposure to religion comes in the form of singing with groups that perform sacred music. It is beautiful and uplifting, sometimes even sublime, but the actual words I sing are, to me, entirely fictional. A few years ago, singing The Dream of Gerontius reduced me to tears as the agony, pain and torment of Gerontius expressed in the music (demons rage, shout and laugh at him) reminded me of seeing my son suffer. But no “Guardian Angel” has come to his rescue, nor has he had a reawakening of glory – unlike Elgar’s Gerontius after he dies. To me, the possibility of resurrection and an afterlife are fictional constructs – at best interesting metaphors – created to help us cope with suffering in our lives. But, sadly, science doesn’t have many answers either. The NHS website says: “The exact causes of schizophrenia are unknown. Research suggests a combination of physical, genetic, psychological and environmental factors make a person more likely to develop the condition. Some people may be prone to schizophrenia, and a stressful life event might trigger a psychotic episode. However, it’s not known why some people develop symptoms, while others do not.”

Sir Robin Murray, Professor of Psychiatric Research at the Institute of Psychiatry. Image: Wikipedia, Creative Commons

Seven years ago, my son’s dad and I decided that we needed to understand the causes, treatments and prognosis in more depth. We arranged to see the UK’s then top expert, Sir Robin Murray, Professor of Psychiatric Research at the Institute of Psychiatry, Psychology and Neuroscience, part of London’s King’s College. We sent him a full explanation of the medical history, and he gave us his insights and advice: essentially that the medication prescribed for our son was the best available, and that recovery might be possible. But there was little to add to our understanding of the causes, and the underlying neurochemistry.

Since then, I’ve tried to keep abreast of the science, and looked at some recent research for this article. A neurotransmitter called dopamine is involved – but exactly which neural pathways and how they are affected is not known. An excess of dopamine causes so-called positive symptoms: delusions and hallucinations. But it can also cause negative symptoms: apathy, low energy, and a decrease in social activity, emotional range, concentration and cognitive function. Dopamine is involved in many brain activities including motivation and reward, movement, mood, attention, learning, memory, sleep and dreaming. Some neuronal pathways – the mesolimbic and mesocortical – use dopamine as their primary messenger, and appear to be associated with schizophrenia. But a direct causal link has not been identified. Indeed, some effective antipsychotic drugs do not block the effects of dopamine. And some schizophrenia symptoms may be triggered when certain areas of the brain have high levels of dopamine activity, while others have lower levels of activity.

Other neurotransmitters are also involved, including gamma-aminobutyric acid (GABA), serotonin, and glutamate, which is important for things such as learning, memory and mood. Researchers are also using Magnetic Resonance Imaging (MRI) to explore links between inflammation and synaptic plasticity, trying to identify neurophysiological biomarkers in children which might signal a risk for psychosis.

The concept of salience is also linked to schizophrenia. Salience is how your brain attaches importance to something. For example, when you’re crossing the street, cars are your most salient thought. And research indicates that increased dopamine levels in the mesolimbic pathway may lead to problems with salience, where attention is diverted from what’s really important to other sensory inputs. In the online publication Schizophrenia, Carlos Larrauri’s 2024 article “Messiah or pariah? Psychosis, science, and finding meaning in lived experience” describes the first phase of his breakdown, aged 24, as involving the salience network:

In my experience, everything around me took on a mystical significance. Jogging late at night through the suburban neighborhoods of Miami, I would hear the wind whispering through the rustle of the palm leaves as if speaking directly to me, urging me toward a higher calling. During those runs, I felt as though every element of my environment was intricately connected, further guiding me toward a deeper comprehension of the universe. Even the advertisements of commercial products and luxury car brands lining the streets seemed to impart special, holy messages.

These revelatory episodes stirred an insatiable hunger for religious texts as I read the Bible, the Torah, and the Koran with fervor and certainty that I was being spoken to through scripture. Yet, my new-found religiosity failed to bring me closer to others; rather, my fixation with religious material became pathological and obsessive, increasingly isolating me. As I retreated further into solitude, I began hearing voices that called me a prophet and praised my beauty and goodness: ‘You’re an angel! You’re so beautiful! So pure!’

Overwhelmed by a brain in dopaminergic overdrive, my mind struggled to make sense of these experiences. With my rational capacities failing, I found nowhere else to turn but to the supernatural for comfort and insight. I interpreted what was happening through a framework of spiritual revelation – a chaotic yet ecstatic communion with God – and I was convinced I was bearing witness to eternal wisdom as the veil between the metaphysical and the real lifted. And the undeniable truth is that hearing the voices of the heavens was, at times, nothing short of rapturous splendor, even as they plunged my life and those I loved into chaos.

Fortunately for Carlos, early interventions helped him and he has made a full recovery over the last ten years. He is now a psychiatric mental health nurse practitioner and university lecturer in Miami, and involved in providing advocacy, health policy, and research to reduce health inequities for people with mental illness. However, my son has never described his psychosis in messianic or positive religious terms. Indeed in the better phases of his illness, he’s expressed strong aversion to anything religious or spiritual (such as mindfulness classes suggested by his care worker – even hot cross buns are refused as being religious). By contrast, during his intensely psychotic phases, incredibly frightening aspects of the Church of Scientology loom large in his delusions. Currently he is convinced that if he leaves his hospital grounds he will variously be captured, tortured and killed by Scientologists. The mental health charity, Mind, has a section on its website called Psychosis and Religion that states: “If you’re a strong believer in your faith, it could feel difficult to know if you’re really being spoken to by God, or if you’re experiencing psychosis.” Another website Living with schizophrenia cites research findings that in the US about half of people diagnosed there have religious delusions. But it also struggles to clarify the distinction: “holding extreme religious views does not of itself indicate mental illness, however doctors should look for any signs of anomalous religious behaviours or beliefs that appear to have started without any prompting and may occur in conjunction with other symptoms such as paranoia or hallucinations.”

So how do we make sense of all this? The rock of religion provides no solace for my son or his family. Religious friends offer to include him in their prayers, which is really kind of them and well meant, but I’m convinced it’s completely pointless. In fact, the suggestion that there is a voice of God who speaks to us all seems somewhat more than ironic given the totally dysfunctional voices that plague my son. The hard place is the inadequacy of science to provide an explanation, a cure, or even just a consistent mitigation of symptoms, without the serious side effects that accompany the entire suite of antipsychotic medications.

British travel writer, Horatio Clare, has recently documented his journey from psychosis to recovery in various articles and books. He concludes:

The drugs do alleviate symptoms. In my experience, two doses of antipsychotics rapidly and thoroughly drained me of mania and delusions, returning to me to sanity in 60 hours after months of escalating lunacy. But they are chaotically overprescribed, wreaking storms of side effects, from weight gain to suicidal thoughts, sexual dysfunction and early death. And they are underwritten by unproven hypotheses.

We have to hope that more sophisticated research on the many neural pathways and neurotransmitters such as dopamine and serotonin will provide some answers. And that the pharmaceutical industry will develop new medications that effectively address, and even prevent or cure, the ravages of psychosis.

Further information

Accelerating Medicines Partnership: Schizophrenia

The Accelerating Medicines Partnership (AMP®) program is a public-private partnership between the National Institutes of Health, the U.S. Food and Drug Administration, the European Medicines Agency, pharmaceutical and life science companies, non-profit and other organizations. The AMP Schizophrenia (SCZ) program was launched in 2020 to address the critical need for more effective treatments for people with schizophrenia and related mental health conditions.

Young people may start to show signs of risk for psychosis months or even years before they receive a diagnosis. These early signs may include: difficulty thinking or concentrating; changes in thought content such as suspiciousness, odd thoughts, or unusual beliefs; perceptual disturbances such as hearing or seeing things others do not, or increased sensitivity to sights and sounds; decreased motivation or withdrawing from friends and family; and new problems at work or school. Researchers often refer to this early period as “clinical high risk”, meaning that people who show these signs may be at increased risk for developing schizophrenia later.

Research indicates that at a two-year follow-up of young people who have signs of clinical high risk, approximately 20 per cent transition to psychosis, some experience some symptoms and problems in functioning, and 41 per cent undergo remission. Being able to identify people who are at clinical high risk can help clinicians treat people early, before their symptoms worsen. It can also help researchers understand who is likely to develop schizophrenia, who is likely to develop other mental health conditions, and who is unlikely to experience longer term psychiatric issues. https://www.ampscz.org/about/schizophrenia

My son has schizophrenia: the rock of religion provides no solace and neither does the hard place of science

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