Testimonies

Peoples' experiences and views on ‘schizophrenia’ or similar labels such as ‘psychosis’.

 

Tell us your story If you have been diagnosed with ‘schizophrenia’ tell us your story

 

Diagnosis helped make sense of behaviour

Elizabeth Mort

I would not advocate a change to the label, though I applaud the investigation.

'Schizophrenia', derived from the Greek 'split mind', seems to sum up my experiences rather well. While not split, in the sense of personality, my world has gone through a blender and been spat back out into pieces. Voices from the outside penetrate my brain. My thoughts are no longer just my own. Each number and each flashing light is a code for someone somewhere. The world is in pieces and every piece has meaning spilling out of it.

Damaging diagnosis that affects the whole family

MC

I would like to explain why I want to support this campaign against labelling by telling you about my experience as the child of a mother given the label 'schizophrenic'.

When I was about four years old, my mother had a 'breakdown' and was admitted to a psychiatric unit; she was in this unit for about 5 months.

Schizophrenia diagnosis helps

Nir Prakash Giri

I had onset of mental illness in early 1990s. It took me years to get a correct diagnosis. I visited many psychiatrists and had long stays in hospitals.

Finally, in 1996, I got correct diagnosis: schizophrenia. My medication was clozapine. It has worked very well in my case.

I am involved in an NGO, Nepal Mental Health Foundation, run by persons with mental/psychosocial disabilities. Our area of work is advocacy, mainly focused on UN CRPD.

Spiritual awakening

Alex Naylor

I have been ill three times now and on two of them I believed I was having a spiritual awakening but was told I had psychosis.

Work became very difficult and I lost my job. Being sectioned was awful. It was a real bad thing having liberty taken away and I refused medication.

I managed to get schizophrenia diagnosis changed

Odi Oquosa

My diagnosis of ‘schizophrenia’ was changed by my psychiatrist because of my persistence, of not acknowledging the diagnosis.

I think the issue was that I was angry towards the psychiatrist for not acknowledging my cultural knowledge or way of life. When I look back, I will say that I have been lucky; maybe I was able to show them some proof, for example, by running art, music and shamanic workshops in hospitals and community. I think by doing that it helped me understand the medical culture and myself. I was able to make my presence felt in a positive way.

The label took away our voice

A mother

This is my personal experience of having my son labelled. This is what it means to us.

Of all the labels to be given, ‘schizophrenia’ is the most debilitating. Our son has a label of Paranoid Schizophrenia! It is the label used by the media to create fear in the public. It has disempowered our son, taken away his confidence, independence and self-esteem. Thanks NHS!

The debate should be wider

A supporter

I totally support the need for an inquiry into the schizophrenia label.  However, I think the debate and inquiry should be much more wide ranging.  

Inhumanity: the real legacy of schizophrenia label

Don Weitz

One way to libel, dehumanize, and sometimes destroy people you don’t like is to label them “schizophrenic,” “psychotic,” or “paranoid.” I should know. In 1951 when I was 20 and locked up for 15 months in McLean Hospital (a notorious psychoprison near Boston affiliated with Harvard Medical School and Massachusetts General  Hospital), the shrinks labeled and stigmatized me as “schizophrenic”  while I was struggling with a common identity crisis that neither my  family nor the psychiatrists recognized.

Cultural ignorance and psychiatric labeling

Naphtali Titus Chondol

I was admitted to hospital in 1988 against my will and coerced into receiving medication that I did not need.  At the time of admission, I was a student of Northumbria Bible College (formerly Lebanon Missionary Bible College) and also undertaking a moral crusade against vices in British society. But my views and beliefs were wrongly interpreted as an illness. If the professionals concerned had taken the trouble to consult with people from my own cultural background the facts would have been perfectly clear to them.

Still waiting to be heard

Anonymous

I was first admitted to an adult mental health ward for assessment when I was 14 years old. I had a history of running away and self-harm over the previous 2-3 years and my parents felt they could no longer manage.

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