“I will listen, I will believe, I will not label distress by any other name”

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My life started with my mother trying to abort me. I was stubborn even then; I wouldn’t go away.

 

On the day I was born by caesarean section, I had bilateral hip dysplasia and scoliosis. Over three years in a metal brace, not touched for hours between nappy changes, feeding, baths etc. No-one noticed that I couldn’t hear fully, and I was later punished for not ‘listening’.

 

At school I was that strange, quiet kid who couldn’t spell, the chaotic kid, but school was better than home. Home was pain, humiliation, neglect; my life almost ended more times than I can remember. Between the ages of 14 to 18 I witnessed sexual abuse. ‘No’ didn’t mean no anymore.

 

I found ways to not have to go home. Aged 18 I moved in with my boyfriend. He drank and was a mean drunk. Aged 20 I was on the road. While running away, I was found! Dragged back to the fold. I kept going back on the road. At 24, I still couldn’t break the silence.

 

I started working in a psychiatric hospital and was told I should study to become a psychiatric nurse. Even as I started training, I knew I had to challenge the system. I saw psychiatric wards filled with people in distress. They were given ‘labels’ in the guise of ‘diagnoses,’ pills and ECT without consent or information. How dare these people in power with authority justify their actions? No questions, no understanding of patient history – where was the accountability?

“I knew I had to challenge the system”

I at least listened to their stories even if no one else would. So, I studied, I learned, I listened, I qualified. Now was my chance to make a change from the inside, to the NHS, to this hospital, this ward or even just to this one patient.

“Thoughts about taking my life were stopped by the fear of ending up on a ward like this”

 

I hid my distress, I hid my pagan beliefs, I hid my knowing I wasn’t female, I hid my pain, buried it deep, hid from my pain and my past. Thoughts about taking my life were stopped by the fear of ending up on a ward like this where patients had no autonomy, no choice. Labels, pills, no one listening, no one really caring, those atrocities had to stop! I made a deal that I would carry on for 5 minutes and 5 minutes more.  This deal went on for years and years.

 

I became the best-read ‘psychiatric nurse’ so I could argue with anyone for what my patients needed. I pushed the boundaries of what they called care, to go that extra mile, to listen not label. I saw labels of ‘psychosis’ or ‘schizophrenia’ given for hearing voices -my gosh I heard voices in my head all the time! – their ‘anti-psychotics’ dosage was increased more and more, but the voices were still there.   This ‘care’ wasn’t about helping patients – it was about label, pill, label, pill and they call that care!!

 

I worked differently to the others on the ward- they stuck to care plans, used pharmaceuticals to quieten patients, busying themselves with nursing tasks. I worked differently in that I would sit and talk with/ listen to the patients, help them learn control of their emotions rather than giving out pharmaceuticals regularly because they were upset. I spent time with them, rather than just the nursing tasks, sitting in the medical room or office writing. I also challenged the psychiatrists and nurses who did not listen to the patient, but nurses would request more pharmaceuticals and psychiatrists would give them. I listened, I asked, I refused to play ‘their’ system. I’d challenge everything and everyone whenever I could.

“it was about label, pill, label, pill and they call that care!!”

 

Aged 32 I got married to a man. But I could never break the cycle of abuse, I didn’t know how. I had an accident and broke many bones. I lost my home, I lived on the streets for four years. GPs told me I was ‘neurotic’, ‘depressed’, ‘anxious’. I challenged them: ‘Would you not be upset or distressed in my shoes?’

 

I was referred to psychiatric outpatients, but they didn’t understand what it meant to be deaf. They phoned and phoned, then wrote complaining I didn’t answer the phone. Respond by phone they said. I wrote instead. I was to see two psychologists.

 

‘We think you have complex PTSD, Personality Disorder, depression and anxiety,’ but only the psychiatrist can diagnose you,’ they said.

 

‘Why do I need a psychiatrist’s opinion,’ I asked? ‘This isn’t medical test results’

 

They argued that psychiatrists know what they are doing, it’s proven by the length of the training! Say again!! I was told it was science, it was a chemical imbalance always would be. Only a psychiatrist’s opinion counts, not mine, because they were medically trained! That does not make any rational sense at all!

 

‘We do not help people without a diagnosis. We are not here to check if you are still alive’.

 

I had read all the books on psychiatric illness and the DSM. How could an opinion be a diagnosis, rather than being based on science? I was now being thrown out by psychiatric services for not complying.

 

I listened to my many inner voices. They argued, pushed, and shoved and some repeated old messages, you are useless, no-one will believe you… well not without a psychiatrist’s diagnosis, my history doesn’t count! Other voices fought hard to stay alive for 1 minute or 2 minutes, or 3 minutes more.

 

I trained to be a therapist. Throughout my training I listened to my many voices, and my inner nurse still sat with compassion and listened, this time to me.

“I call myself a listener of distress”

 

Eventually after years of working with the distress, I now get to embrace who I am – a disabled, trans, non-binary therapist who challenges diagnosis and sits with their clients’ distress, rather than labelling them. I will never tell a client they should not have a  label or should not take medication, but I will slowly educate them and allow them to explore in a space I will ensure is safe and non-judgemental. Some call me a ‘trauma informed’ therapist. I call myself a listener of distress. Unravel your story on my floor and allow me to help you roll it up in a ball or file it away where it is manageable. I will listen, I will believe, I will not label distress by any other name.

 

 

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As a medically retired psychiatric nurse and survivor of abuse, Di has seen how patients were treated and spent time challenging the system. When Di was in an accident they struggled with the physical changes and challenges of being disabled and living with past and present abuse. Di was referred to psychiatric services and became a psychiatric refuser. Now they work within private practice, helping people understand their distress.