Prejudice about my schizoaffective disorder has hurt me more than the diagnosis

This is one of a series of exclusive stories that we are highlighting as part of the Time To Change See The Bigger Picture campaign, led by the mental health charities Mind and Rethink Mental Illness, which aims to end stigma around talking about mental health. Please note that these articles contain discussion around topics that may be triggering to some readers.

A friend’s mother once told me that she was scared of me – even though I have never, ever, been violent to anyone. She admitted it was because of my schizoaffective disorder.

Close school friends have, in the past, felt unable to invite me to important events in their lives, as they too were frightened of me.

To many, a diagnosis of psychosis puts pictures in mind of scary horror movies and of dangerous people. In actual fact, having a severe mental health problem, in which I experience periods of psychosis, means that person is much more likely to be a victim of violence rather than the general population.

I know this more than most. I live with this diagnosis, and it has had a huge effect on my life.

As well as being vulnerable to violence from other people, we are also many times more likely to hurt ourselves, as living with unusual thoughts and feelings can be exhausting and very emotionally challenging to deal with.

Many times, I’ve been at the point of doing damage to myself, and it is down to inner determination and the support of a few important people in my life that this has been prevented from happening.

Although I’m now in my mid-40s, when I look back on my life so far, I realise that alongside the difficult feelings and thoughts I manage as part of everyday life, what has perhaps been a greater challenge is the attitudes and fears people still hold towards those of us with severe mental health problems.

I still prefer using the term ‘prejudice’ rather than ‘stigma’. Because prejudice, as the name suggests, means to pre-judge or make your mind up about a person before you have the chance to understand or listen to their story.

These pre-judgements have often left me feeling hurt and confused at what I considered rejections from people I had known since early childhood.

The reality is that I’m actually scared of other people when I experience psychosis, and am far more likely to try and harm myself than anyone else.

What I really desperately needed was someone to talk to, but I didn’t feel anyone could help carry this heavy life experience

I was diagnosed with schizoaffective disorder in my early 30s, although I had been struggling with my emotions and perceptions for some 10 years up to this point.

Doctors were reluctant to diagnose me due to the prejudice attached, so I spent years without a diagnosis.

I had grown up in a rural area and moved to a big city for university, and found the whole experience of this transition overwhelming. I struggled to make friends and keep up with the demands of my course.

I found it difficult to communicate my feelings of isolation to my friends. I didn’t know where to find the help and support I desperately needed.

After losing a close relative and struggling with grief, I had a huge breakdown. I starting finding it very difficult to know the difference between what was real and what was not. I was hearing voices from the radio and television that seemed sinister and intimidating and the pages on books seemed to change, as if they were communicating messages that had significance to my own life. I was fearful of everybody, and felt like there was no one I could trust, or who could understand me. I felt totally alone.

I was finally taken by a friend to see a psychiatrist, who put me on anti-psychotic medication, and told me that I was experiencing psychosis. I was too frightened to tell him what I had lived through. The feeling of being vulnerable and so alone meant I just couldn’t get words out.

My everyday life is much more ordinary than you might imagine

The trauma and fear from my mental health breakdown were too much. I understand now that I had experienced more distress at 19 years old than most people do in a lifetime.

What I really desperately needed was someone to talk to, but I didn’t feel anyone could help carry this heavy life experience. I felt shame and embarrassment at my diagnosis.

I spent years living back at home with my parents fearful and too paranoid to go out.  As I watched other people get on with their lives I felt very left behind.

Eventually I made a good friend when I was in my 20s and he persuaded me to go back to university.

My life finally began again. I got a degree and have now started the tentative steps towards finding meaning in my life and also, to some extent, meaning in the things that have happened.

My life is still a challenge, as I still experience some degree of fear about the world and still have times when I am frightened of it. But I have finally found a lot of love, empathy and understanding these days. My everyday life is much more ordinary than you might imagine. I realise that life is not easy for anyone so it has certainly given me empathy with the struggles we all carry.

I am now starting to try and fix myself as much as I can with the help of close friends I have finally found who listen and understand.

Before you judge people experiencing severe mental health problems, please imagine that the prejudice they experience from others may be even more difficult than the label itself.

If you can, consider how you can be kind and support people rather than judging. Imagine what else they may also be carrying alongside the diagnosis and give people a chance to recover.

Time To Change

The reality of living with less common mental health problems like schizophrenia, bipolar disorder and borderline personality disorder remains largely misunderstood. Time to Change is calling on people to see the bigger picture – click here to find out more.

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