Testimonies

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

 

 

A brutal medical bloodsport

Bogman Palmjaguar

I am the subject of Luke Fowler's 2007 film on 'Bogman Palmjaguar', widely shown around Britain and abroad. I have a developing unfinished website to go with the film. My case shows how i spent decades of my adult life labelled as a so called "paranoid schizophrenic" when persecution found to be real. I have been off all so called "schizophrenia" medication for 38 years in 2013. I faced decades of failed attempts by the "system" to get me under the cover of the label in what became a brutal medical bloodsport.

Does any label make sense in the world at large?

Roy Doré

My son, Paul, was given a diagnosis of paranoid schizophrenia some 10 or 12 years ago. It's been a long journey for him and his family and friends since then, or a long roller coaster ride that never ends would be a better description from my point of view! Paul is doing ok at the moment, he seems to have found a mix of medication that gives him some relief from "the voices" but they are always there in the background.

Even the best of us are 'messy'

Nicci

I have heard voices for as long as I can remember. This goes back to at least 5 years of age, along with it came some inappropriate behavior and outbursts. I was first given medication for ADHD and from my perspective it seemed to work really well for me but my mother decided to discontinue its use.

Once labelled, everyone sees you are 'delusional'

Paul Nosworthy

I have been labelled as Schizoaffective, I first started hearing voices when I was 14. It was during a time of great stress, fear and pressure when I was abused physically and drugged. I am told that these first few years were the prodromal phase of the condition; a precursory few years where things started to happen psychosis wise, these symptoms went largely unnoticed at the time. When I was 17, I got my first diagnosis of psychosis and first really and genuinely became disturbed because of hearing voices.

Living with 'hallucinations'

Yassin Zelestine

I was a university student in the 1990s. I am mixed race. My living conditions were poor.

When I finished university I went home to my parents and started working in London. I felt isolated and under pressure. I contracted a virus. I was very physically ill, which included auditory and visual hallucinations, and exhausted. Also, I was being bullied by these girls on the train to work. The hallucinations did not go away. Eventually I was taken into psychiatric hospital. I have been admitted three times.

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.

Pages