Testimonies

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

 

 

The role of trauma and abuse

Anonymous

I had been in a relationship where I was assaulted several times. This experience was life shattering. I had trouble trusting men. I was traumatised and grieving but putting up a brave face. I was also suffering from a debilitating skin condition that had covered much of my body. After a period of time I started seeing someone else. To me he was my life raft. When I decided that my new boyfriend was a little strange and that he wasn't a stable person for me to build a life with, he got a sense that I wasn't interested in him and contacted my family "worried" about me.

Claiming the label, for different reasons

Grace

I was labeled paranoid schizophrenic at age 15 in 1967, but was not told my label or anything else (symptoms, etc.).

What is schizophrenia anyway?

Satii

I always knew that there was something not quite right. As I got older this became much clearer. I was a bit of a wild child and always felt apart despite being very popular as a child and young adult. I started off by thinking everyone could hear voices telling them what to do, advising etc. It was way back in the eighties when I had my first diagnosis. I was referred to mental health by my GP who was treating me for depression.

A lifetime prison sentence

Anonymous

I have suffered with something since puberty but it was not until the age of 20 when I was formally diagnosed, for the second time, with schizophrenia. Unfortunately it was the diagnosis at age 20 that stuck with me for 17 years. After I was given this firm diagnosis I was given Clozapine, a medication which, as you may know, you're supposed to be on for life.

Life may have been different if my dad had help

Kerri Lynn
This is my story.. My father was diagnosed with schizophrenia in his 20s. I never really understood "what was wrong with him" when I was young. I didn't really have friends over to the house - back then I felt ashamed or embarrassed. All I could think was what if he starts laughing or crying for no reason in front of them. Or what will they think of me having a dad who hears voices. I kept quiet about my dad's "disease" to most. Only a few very close friends knew. This was the late 80s and the 90s.

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.

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