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

 

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.

Psychiatric drugs causing brain dysfunction

A family member

I would like to point out my observation of my son Alex’s medication history over one year which I think is important to understand what happened with Alex. And which has been ignored by all doctors.

First, Alex used ‘Adderall’. As you know, that drug is a brand name of amphetamine salts-based medication used for attention deficit disorder and narcolepsy.

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.

Media prejudice is reason for changing 'schizophrenia' name

Anonymous

I hope it's not just a lull, but the media onslaught using the term 'schizophrenia' in a prejudicial way, has abated over the last two years. Good! I have not been aware of a sensational headline or Radio 4 news item in that time, neither have I had a Retink media alert for the period. Maybe it's the Time To Change campaign having an effect. But stories using 'schizophrenia' as a code for: 'Next up it's a random stranger killing' have ceased for a while.

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!

I got lucky, but not everyone will

Jean

I first came into contact with psychiatric services when I was twenty-five. I actually went in as a voluntary patient as I had no idea what the services were like. I had read a few psychology books and I honestly expected the professionals would be empathetic and interested in finding out about my experiences and feelings. I thought there would be lots of therapy and the drugs would be optional.

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.  

What destroyed me was not an 'illness'

Jean Davison

I was diagnosed with schizophrenia back in 1968 at the age of 18. I had sought psychiatric help myself and agreed to go into hospital as a voluntary patient. At the time of hospital admission, I had a job, a boyfriend and an active social life, although I was a painfully shy teenager. I was dissatisfied with my lifestyle, struggling to come to terms with the loss of my religious beliefs, felt life was empty and meaningless, and I was living with my dysfunctional family.

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