Be gentler with people who experience altered states of mind
Where do the voices start and stop, and where do I start and stop. Whose voice is whose? Now, when I look at my mental illness, I see it more in terms of a list of experiences rather than a diagnostic label.
I first experienced mental unwellness when I was 21. I didn’t get a diagnosis at the time; I just had racing thoughts and couldn’t sleep. I think the cause was stress, as I had boyfriend and work problems. I went to a psychiatrist who gave me medication, but that only seemed to last for about a week.
I rested up over summer, then got a job, and nothing happened again until I was 43, when I started hearing voices.
Stayed up at night talking to my voices
I was living by myself and would stay up all night talking to my voices. They became my world. I was losing sleep and I couldn’t stop the voices, they were there permanently. They would say, “the hardhearted hearts are harming over the hardhearted harmonies”, and things like that. It was like poetry.
I kept it to myself for about a month before I went to the psychiatrist, who put me on medication. The voices slowed down, but they didn’t stop. I would be going around the supermarket with a scarf over my face so people couldn’t see me talking to my voices.
Six months later the voices were still there. The doctor gave me a hearing voices booklet, which I read every morning. It contained strategies for dealing with voices, such as turning on the radio, or doing activities.
Mother was very supportive
My mother was brilliant and was very supportive. She was getting help from a family support organisation, and one day a lady from the organisation told me I had schizophrenia. I burst out crying, as I hadn’t realised. I thought “oh no” because I thought the voices would stop and she brought me down to earth by telling me what I was afflicted with.
My doctor hadn’t given me a diagnosis before. He had just concentrated on my symptoms. I asked him about it, and he said I had schizoaffective bipolar. I didn’t know what that was and had to look it up.
When I realised it wasn’t going to be like the first time, where I came right, I got involved with a community arts centre, painting and printmaking, and started weaving. I became involved in whatever would get me out of the house, so I could lessen the voices as much as possible.
Slowly I started coming off my medication. I was coping with my voices. I was less afraid of them and learning to ignore them, and they began quietening down.
Then, all of a sudden, I became really unwell. I thought the Sky TV dishes were tracking me, and a yellow van outside was recording sounds from my house - you don’t realise how many Sky TV dishes there are out there! I became quite paranoid.
The voices got really bad and I became quite assertive – well I thought it was assertive – but I got myself into trouble and ended up in hospital under a compulsory treatment order.
It all felt a bit heavy-handed at the time, but while I was in hospital I noticed someone had peer support, so I rang up and got a peer support worker for myself.
Peer support an equal and reciprocal relationship
It’s an equal and reciprocal relationship, as well as being quite peaceful and interactive. I was able to talk about my week, and keep a record of what I was doing and where I was going.
I built up my strength really slowly, bit by bit, and peer support was just the sort of positive encouragement I needed. I was able to set small goals and have celebrations when I achieved them.
I had also been applying for jobs at the library and my peer support worker was brilliant helping me prepare for the interview. I couldn’t have done it without them. I almost got that job, which gave me hope.
I thought maybe peer support was for me, so I did peer support training and I ended up getting a job as peer support worker and I haven’t heard any voices for several months now.
I don’t know why that is, this is the first time in 13 years I’ve stopped hearing voices. My experience has taught me how fragile mental health is, so I’m gentler with people who experience altered states of mind.
My advice to people who are on the recovery journey is to have a person on board who is really positive, and believes you can recover. When I was told I had schizophrenia, I thought “help this is entrenched, I can’t recover”. But my mother was really, really positive and said I could do it – I could function again. It just takes time.
