‘This feels more like spin-the-bottle than science’: my mission to find a proper diagnosis – and treatment – for my son’s psychosis.

I wrote this piece about my son living with psychosis for the Lifestyle column of the Guardian Weekend Magazine. I received message after message from people telling me their own stories, all too similar, all too deserving of a more compassionate and alternative approach.

There are nights that I wake and in the disorientation of those first conscious moments, I am right back there. Los Angeles. 2009. Winter. Zach has entered my room, perched on the edge of my bed, and begged me: “Mum. What is going to happen to me? You must know.”

I see him in all his anguish, my younger son in his last teenage year. He has just been discharged from the hospital after having what the doctors had called a psychotic break, when he thought that his friends weren’t his friends but out to harm him, that our house was bugged, and that helicopters were instruments of surveillance, trained on him. Years before, it would have been called a nervous breakdown. I don’t like either term much, but I think the connotations of a nervous breakdown feel more apt. It was this sense of nervousness that I witnessed on the night I first took my boy to the psychiatric hospital.

He was slim and strong back then from long days spent surfing with his elder brother, and there was something of the shy scholar in him, the animal lover, the erstwhile Essex chess champion, the boy with the amber-flecked eyes.

Just a year prior, I had been so ready to let him fly the coop. No empty nest syndrome for me. We were settled in California, and I was happy with my new partner, Nance; we had far too much still to discover and enjoy to feel daunted by this next transition. Besides, this son of mine, nicknamed golden boy because of how much the neighbours idolized him, had big plans. He wanted to travel, to become a scientist or a professor.

So, in those first days after the break, it didn’t seem possible that Zach could have left the world we knew just as he was about to launch himself into it. How could he have departed so thoroughly from the reality we thought we shared?

I had expected him to come home from being sectioned—or what in America is known as a 5150: a compulsory stay in a locked facility for up to 72 hours—feeling and looking better. I thought the doctors would have some answers, some method or plan for how to fix him, but instead his skin was pasty, his pupils large as he scanned the room, his fingers raking at the quilt. He couldn’t sit still.

“It feels as if there is something inside of me, and it’s trying to get out,” he said. I would come to learn that this agitation had a name, akathisia, and was caused by antipsychotic drugs.

I was nervous too, that night, scared not of my son but of his fear. Everything I knew about how to parent was tested in that moment.

“You will be fine, Zach,” I told him, my hand on his, willing it true. “You will get better. You’ll go back to college. Do all the things you want to do.”

In earlier days he may have trusted me, as his mother. I might have had more faith in my own words too. But both of us knew a shift had occurred. This city, having once promised opportunity, was suddenly foreign. And so were we. Back when we were new to LA from London, my boys, Zach and Dale, twelve and thirteen, had enrolled at the local middle school. Dale loved being the new kid, a fish out of water and the centre of attention. Zach loathed it. The turnstiles and metal detectors in the foyer unnerved him. He was afraid of the abstract threat of violence, of gangs and weapons. He struggled with the change in ways that we tried to assuage with love and without undue concern: he was sensitive, that was all.

I realise now that these things count, that the trauma of feeling different can lodge itself in our cells and remain there.

Psychosis is often thought to be genetic, or a symptom of brain chemistry gone awry, which is what I was led to believe for much of my journey through the traditional mental health system. Zach’s first diagnosis was psychosis NOS (Not Otherwise Specified), a vague kind of darned if I know description. Later, depending upon which doctor he saw, he was classified with either schizophrenia, paranoid schizophrenia, depression with psychotic symptoms, or more recently, schizoaffective disorder.

These labels plucked from the DSM: Diagnostic Statistical Manual, a text often referred to as the bible of psychiatry, felt more distracting than helpful, masking a deeper truth about what had happened to Zach and our family. They ignored larger questions that were messy and ambiguous, like whether the real story began before we moved across the world, when Zach’s father left, or when we lost my mother, Zach’s precious Nanny Shirl. Or later, when he entered one of California’s most prestigious universities and suffered from academic pressures coupled with sleepless nights as he crammed for exams. Was all that a perfect recipe for psychosis?

“I want to return to my studies,” Zach told us after his first hospital stay. “I worked so hard to get into that college.”  It was true. He had won a full merit scholarship. We bought him a skateboard so he could move easily through the campus crowds he still feared, and headphones to drown out the external stimuli. But his angst and suspicion persisted. On the rare days when I managed to wake him from his heavily sedated sleep, ply him with coffee, and drive him to class, he was too anxious to leave the car. He distrusted almost everyone, including me. He never felt that way about Dale, and I’m grateful for that. Maybe because Dale never tried to fix him, to change him or chastise him. He was just there, his big brother, with a lifetime of shared history and mutual understanding.

Dale, of course, suffered in his own ways from witnessing Zach’s altered state. Psychologist Diane Marsh, in her book, Troubled Journey, recognizes that in families where one child experiences mental health challenges, well siblings fear that they might catch or develop the same thing, and may experience survivor’s guilt if they don’t.

But while Dale tried to process our new reality, I craved solutions, and the more I searched the more confused I became. First, I discovered that no disease markers show up in brain scans or blood tests for any of these so-called disorders. Nobody seems to know for sure what is really going on, which feels more like a spin-the-bottle game than science. I also came to understand that the effects of the antipsychotic drugs were intolerable for Zach, far worse than the symptoms that they were meant to alleviate.

I recall the way his shoulders slumped when I held out the pills and a glass of water to him each day. “They make me feel emotionally numb,” he said, “I can’t live like this.” One evening he pushed the drugs back at me, held the water glass to my chin, and said, “If they are that great, why don’t you take them?”

The worst part? I couldn’t help him. To quit these drugs cold turkey would lead to severe withdrawal. Zach tried it once and ended up in the hospital. Finding a psychiatrist who is equipped and willing to support tapering in a safe way is rare.

In the USA over eight years, Zach was detained in the psych ward several times, for up to three or four weeks each time. His despair earned him a label known in the industry as non-compliant. When he was forced to comply and the drugs still didn’t work, he was classed as treatment resistant. Talk therapy was not offered on any of his acute psychiatric wards, in the USA or the UK. This is not uncommon in inpatient systems. Patients who are deemed to be actively psychotic or who are hearing voices are considered too unwell to benefit. This relatively modern view has developed alongside the rise of the pharmaceutical industry and the belief that altered states are a disease rather than a process or response to trauma resulting from difficult life events.

This is not the case everywhere. In Lapland, a more radical understanding of extreme distress led to aprogramme called Open Dialogue. This therapy revolves around a family and social network approach and has contributed to the suicide rate in Finland dropping from one of the highest to one of the lowest in the world.

I meet regularly online with two Open Dialogue therapists. Dale and Nance have joined me, but so far, Zach, the person at the centre of the network, who might benefit most profoundly, has not been allowed to participate. He is back in a locked ward, in treatment that sees his brain as broken and needing chemicals as the first line of defence.

I had moved us back to England three years ago, just Zach and me, to this house near Epping Forest, with a garden and view of the stars. I hoped that the UK would give us new options, and that the break from Nance would help to heal the rift in our relationship caused in part by loss and grief. But the pandemic derailed us. Isolated and living alone with Zach, who went off his meds, I felt overwhelmed with trying to keep us both safe. Mental health services had ground to a halt, and the new and changed systems made me feel like an immigrant all over again. When Zach took apart the gas cooker one night, emptied all our food into the bin because he feared it was poisonous, and wanted to lock me in my room to keep me safe, I panicked and took him to the nearest hospital.

The unit where he is currently detained is an hour away by car, and he has already spent the best part of eighteen months there. It is meant to rehabilitate him, but rules abound. Zach cannot have multiple items classed as contraband—such as drinks in cans or glass bottles, shoelaces, even though he has never attempted to harm himself.  After each prescribed and limited visit, when we return to the hospital, I wait with him in the lobby. He must be searched, breathalysed, and scanned by a metal detector before being accompanied through the air lock back to the ward. I watch the pat down, Zach’s face pained. I see the tremor in his right hand, yet another drug side effect. My stomach drops every single time. I wonder how much this absurd system is costing us all, and how on earth we will ever recover from it. How anybody does. Research conducted by psychotherapist James Davies has shown that despite 500 billion pounds spent on mental health in Britain since the 1980s, it is the only area of medicine where outcomes have stalled, and by some measures are even going backwards.

Still, I hold on to hope. Some of Zach’s nurses are compassionate. I won’t forget their names. Open Dialogue trials are being conducted in some of the UK NHS trusts, and more ex-psychiatric survivors and their loved ones are rallying for radical alternatives to the dominant paradigm of the psychiatric system. Soteria Network, for example, is a non-coercive space where people going through psychosis can be supported in a compassionate, force-free environment with minimal medication. I have also discovered a community of other mothers through Safely Held Spaces, a group dedicated to supporting those navigating mental distress. These women help me carry my grief. We ask what has happened to our children rather than what is wrong with them.