The theme of this year’s World Mental Health Day (today, October 10th) is “Living with Schizophrenia”. If you are tempted to dismiss this theme as having nothing to do with you, think again.
Schizophrenia is an emotive and contested term that does little to make the experience to which it refers understandable or human. However, the suffering to which it refers is very human and intensely distressing for anyone who has been there.
When someone becomes so emotionally overwhelmed that they withdraw from and lose touch with reality, we describe that experience as a “psychosis” or “psychotic episode”. It can become impossible for them to distinguish what’s real from the nightmare their mind can create. This is a very painful and frightening not just for the person concerned but for families and carers who witness someone they love behaving in ways that seem radically out of character.
Schizophrenia describes an abiding vulnerability to psychosis.
Without practical help to come to terms with the experience of psychosis and to re-engage with reality, a person will continue to retreat from the world around them, and adopt a lifestyle that others may view as odd or “crazy”. While their inner turmoil contributes to their alienation, the poverty and loneliness of their lives may reflect our failure to engage them in a proper recovery plan, centred around their deepest wish to make something of their life.
Our mental health policy, A Vision for Change, states this very clearly:
“In the absence of comprehensive recovery-oriented care, problems experienced by service users include loss of self-confidence and a sense of purpose in life, institutionalisation, unemployment, social isolation and housing difficulties.”
I remember a young man I saw many years ago who was brought into the psychiatric hospital by his parents because he was convinced the IRA were following him around Dublin in white and red vans. He was a gentle soul, obviously terrified and confused by what was happening in his life.
Being a well-intentioned but naive trainee, I thought I knew exactly what to do. I invited him to walk outside the hospital with me and point out anybody that was following him.
We walked over Rialto bridge into the village together. I pointed out vans that fitted his earlier description but for the next hour he was unable to confirm even one possible suspect. We returned to the hospital and I asked him to reflect on the significance of the experience he’d just had. He was lost for words and very downcast. He left with a vague promise to return.
The next morning he was admitted to the hospital by ambulance, in a frightful state of breakdown. Rather than “cure” him of his delusions, I had taken away the one thing that had been keeping him together. He taught me a lesson that I’ve never forgotten.
At the heart of the experience of psychosis is a real person, like you or me, who is painfully conscious they are losing a sense of who they are. In their struggle to maintain some degree of control, they may latch on to unusual ideas that seem to explain what’s happening. While their “explanations” appear irrational to the rest of us, they may enable them to maintain a tenuous hold on reality.
What helps?
The evidence is compelling - notably, the research of Pat McGorry - that for many young people who experience psychosis, early invervention can spare them a lifetime of being disabled, excluded and stigmatised.
Even for those who remain most vulnerable to recurrent psychotic episodes, early intervention can extend the periods in their life where they are well. This gives them a better chance to learn basic life skills, build real friendships and reduce the risk of social isolation.
Medication may be life saving and hospitalisation may be protective for someone in the grip of psychosis. But among service users there is much dissatisfaction with the over-reliance on medication and hospitalisation as the only long-term solution to coming to terms with psychosis.
Several groups, both internationally and closer to home, have proposed a more therapeutic approach that calls for a different kind of milieu to hospital.
Ivor Browne summarised this thinking very clearly in his most recent publication:
“It is essential that a total supportive setting be provided, where a loving, tolerant, flexible atmosphere would be created, but also one providing a healthy work environment, close to nature. In addition, a broad range of psychotherapeutic, artistic and other alternative health therapies including body therapy, open-dialogue, acupuncture and healthy diet are healing. Antipsychotic medication may also be necessary at times in order to make contact and establish a relationship with the person, who may be cut off in their own psychotic world; but it should always be given for as short a time as possible and in as low a dosage as possible.”
The prognosis for recovery has as much to do with our vision of what’s possible as with the nature of psychosis. Central to the development of this vision is the voice and active participation of service users. They and their families have the greatest vested interest in transforming the mental health system that both enables and constrains their recovery.
Any attempt to construct a viable recovery-oriented approach will fail miserably without their continued engagement.
Tony Bates is Founder and CEO of Headstrong - The National Centre for Youth Men