I was in the lobby, waiting to see the osteopath …. again. The stress of caring for my son – my beautiful lost boy - for the previous three years was beginning to take its toll on my body. Bored and in pain, I scanned the notice board.
“Does someone you love have Schizophrenia?”
…. leapt out at me. YES!
I wept through my treatment, burbling on and on; how hard it allwas trying to cope with my son’s illness and a fulltime job, a new relationship, my daughter etc. etc. To my surprise the therapist shared her experience of a psychotic member of her family. There’s more of it about than I thought! My back pain forgotten, I called the number on the flyer.
The workshop was the first time in three long years that I had had the opportunity to tell my story and to listen to the stories of others trying desperately to cope in an incomprehensible situation. Our loved ones were no longer recognisable but we clung to the hope that somehow, someday the young people we loved would return to us. Although we were all different, our experiences after our world’s collapsed, were the same; the nightmare of medication, hospitalisation, delusions, hallucinations, desperately trying to hold onto to the rational world.
Guilt was the prevailing emotion. Was I somehow responsible? Had I done something or failed to do something that might have prevented this illness? Could we do more now to help our sons, daughters, brothers, sisters to recover? Somehow, by the end of the weekend I began to feel the lifting of the paralysing weight of guilt. It was still there, it will always be there but I began to find a way around it. We cried a lot of course, but mostly I remember laughing a lot. And then we went back to our lives.
We continued to meet regularly. We learned to relax, to take time for ourselves, to listen to our bodies. We shared our experiences of dealing with ‘the system’; the social workers, the psychiatrists, the family welfare support groups, the carer’s assessments, the benefits system and how none of it seems to work; of being excluded, marginalised, of how we were the only continuing thread through our loved one’s illnesses and yet we were the one’s who were ignored, blamed, stigmatised as neurotic parents.
No-one who has not been there can understand the frustration of ringing alarm bells and being ignored, trying to get through to crisis teams,social workers after 5pm and at weekends, days and nights spent at A & E Departments, never mind the agony of getting them there.
We, those people who have cared for years for a loved one in psychosis, are the people who know about the day to day reality and yet we have no voice. Loving Someone in Psychosis is, I hope, going to be that voice. Perhaps together we can change ‘the system’ to one that works.
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