When we met, my husband was a solid, loving, intelligent and accomplished person. Like most people, we planned to have a family. After our first child was born, my husband became a little depressed and stressed, and inexplicably hostile towards people. He started to change jobs regularly because of increasing convictions that he was being undermined and sabotaged.
For many years, our family life was characterised by despair, destitution and terror. The children were profoundly traumatised by witnessing rage, confrontations with community members, and absence from our lives. His paranoid beliefs worsened and he was unable to keep a job for longer than several months, until finally he attempted suicide whilst overseas fleeing his persecutors, using medication provided during a previous hospitalization.
I made the decision to go overseas and bring him back to live with us in Australia, not only because he clearly would have died if I hadn’t, but because I believed in him – believed that there had to be a way to help him recover if I could just keep him alive, and that our children would be unthinkably harmed otherwise. This has been the right decision.
In the absence of any other options, he went straight into hospital. He was given a diagnosis of paranoid schizophrenia. For three years after this he lived in mortal fear for his life, despite trying over ten different neuroleptics, including combinations of heavy doses of Clozapine and other medications. None made any difference to his paranoia or associated levels of terror, merely his sedation levels.
He has since been an in-patient many times, both in locked and open wards. These experiences have been profoundly anti-therapeutic for him (his second suicide attempt in 2010 – his weapon of choice Clozapine – was partly out of fear that I would have him hospitalised as I could see he was increasingly overwhelmed by paranoia, and he would rather have killed himself than be re-admitted), and traumatic for the children. His times in mental health units, other than physically stabilizing him following suicide attempts, have done him more harm than good, and have regularly been followed by more suicide attempts. I gave up work to keep him alive. The lack of any practical, financial or emotional support was overwhelming, and destroyed my belief in service systems. At the very time we needed effective help to address his psychosis, financial resources, practical help and human nurturing, the service system delivered none of these, but effectively drugged and dumped him. His courage and dignity through all of these experiences has been something I’ve had the rare privilege of witnessing.
Whilst a reductionist explanation of psychosis is still prevalent in the psychiatric establishment and broader community, this belief and its associated frontline interventions are not supported by science, outcomes, or many lived/living experience experts and its application in health systems as the frontline approach continues to cause great physical and emotional harm to individuals and their families.Lived Experience