When my son first became mentally unwell, instinct led me to ask him if he was hearing voices. When he replied ‘How did you know?’ I don’t remember what I replied, but I do remember sobbing for most of the night after he’d gone to bed. My reaction was one of terror, and my son quickly picked that up.

It took me ten years to learn to be curious, less afraid. Now I wanted to know who they were and what they said.

My son had learned to be more guarded. He told me the voices had for many years threatened him to never share their messages. They told him to not talk to me, to avoid voice-hearers’ groups, to not take medication. Maybe because I am now interested rather than panicking, he has gradually opened up to me about his voices.

They are not kind; they have often suggested he should kill himself, so he is very relieved that medication has largely silenced them. But now that we can talk about them, together we have been able to appraise their advice, and begin to sense the fear that lies under their threats. I found the book ‘Overcoming Distressing Voices’ by Mark Hayward, useful in knowing how to help my son, who has since even occasionally allowed me to speak to his voices.

I have learned so much that twice in the past year in the course of my (not mental health related) work, I sensed that two separate people were hearing voices just by noticing their behaviour. One person I was talking to was unable to pay me attention or complete his sentences, and the other was looking intently at a space just beyond me. ‘I’m just wondering if you might be hearing voices?’ I asked. I was surprised when both said ‘yes’, but was able to respond with genuine interest and useful advice.

How I wish I had been able to react that way to my own son all those years ago

Jenny*

I could not relate to my daughter, it was as if some alien had taken over her body and our previously good relationship had become ‘spiky’, unpredictable and difficult.  Ward staff were busy with their patients and no-one had time to help me understand and learn how best to help either her or myself.  Some staff treated me as if I was responsible for her situation and seemed openly hostile.  I had been a respected professional so that barrage of antagonism was very new.  It was a time of the deepest despair and isolation I have ever known.  Friends didn’t know what to say or do and whilst I felt for their embarrassment, that didn’t help me either, and feeling awkward, they found it easier to leave me alone.  For the first time in my life for months, I could see no way forward; I was lost.

Judith Varley, ISPS UK 

Two years ago, my son had his first ‘psychotic episode’. The professionals started him on anti-psychotics that did not prove very effective compared to really bad side effects he experienced. That was what made me spend many hours listening to him and try to understand his struggles. The professionals he interacted with did not really believe that this “psychotic” speech could be worth investigating. But my feelings would make me think of some psychological issues and, in addition to the medication, we started individual psychotherapy, then family therapy but this did not prove to be helpful for him at this time, although the family therapy did help us, my wife and me. The problem was not so much my son’s ideas but rather the intense anxiety that he was experiencing, resulting in him being unable to cope with life. Neither the medications nor the psychological help we had tried were helpful and he ended up being hospitalized and medicated with other antipsychotics, according to the NICE guidelines. The last medication tried was helpful to a certain extent. He is much calmer now.

This is where we are at after two years: my heart would favor causes like psychological underlying issues or struggles to make sense of the world and my son’s place in it; my brain has to acknowledge that medication may be (hopefully temporarily) part of the way forward although I believe it does not address the underlying issues.”

In my own experience, it has been important to apologise for my original unwillingness to believe my family member’s voice-hearing and the isolation that may have caused.  Equally it has been important to forgive myself and place my denial in the social context of stigma  and ignorance about voice-hearing.