September 25, 2014

Human search engine photoI volunteer with the Human Search Engine project, a Time to Change grant-funded project that uses real stories to dispel mental health myths. Human Search Engine pops up at busy events across Oxfordshire and allows members of the public to submit questions to the 'search engine'. Their question is then answered by one of the project's 'Voice of experience' volunteers. During a 20 minute one-to-one conversation, the questioner will get to know the volunteer and learn from their first hand experience of mental health problems.

My story

I’ve been involved in the Human Search Engine since March 2014, when I took part in the first event in Oxford, and have taken part in several events since then as a 'Voice of Experience'.

Prior to becoming a 'Voice of Experience' for the Human Search Engine, I hadn’t really talked about my illness (apart from with some friends and family) and it was like carrying a hidden secret. I was going to work and people didn’t know about it.

With the right balance of medication, I've been well and have been able to work

I was ill from 2001 to 2003. In 2001 I became manic and also experienced psychosis, I then developed agitated depression; this is a form of depression in which you are physically restless all the time. I then had a further period of mania before gradually recovering through ECT and medication. I was diagnosed as having bipolar disorder. Since 2004, with the right balance of medication, I’ve been well and have been able to work.

Not many people know about my illness

Not many people know about my illness. My husband was my main carer. He was really very good at talking about things and still is 100% supportive of me. I am also a member of a Buddhist group and have been able to speak to some fellow members about my illness. I also talk to close friends about it but otherwise I am very selective about to whom I will disclose.

I found myself drawn to the advertisement for the 'Voice of experience' role

I saw the advertisement for the 'Voice of Experience' role in a local community newsletter and I found myself drawn to the opportunity – it was exactly the right moment for me, as it turns out.

My role on the project means that I answer questions about mental health which are submitted by the public. They submit the questions to a ‘Search Engineer’ who then asks us which of us would like to answer it. I was the only person at the Oxford event with experience of psychosis, so I answered the questions about that.

Speaking to the public was very cathartic

Before the first event I was quite nervous and didn’t know what to expect, but in fact it had a double effect: speaking to the public was very cathartic but what I hadn’t expected was how much I would get from meeting other volunteers with similar experiences to myself. We sat and talked about our experiences and when someone came back from answering a question we’d ask them how they’d managed it and what they’d said.

Through the Human Search Engine I’ve had a number of conversations with the public about psychosis and bipolar, including dispelling the myth that psychosis is in some way a desirable state, as that wasn’t my experience at all! I also spoke to someone about when I tried to come off medication and it didn’t work.

By attending these events I feel like the burden has gone

For nearly ten years I’d been going round with this hidden secret and I found by attending these events and especially talking with the other people with experience of mental health problems, that that burden has gone. It has been very liberating and I think that whereas before I might have avoided talking about it at all costs, I now wouldn’t mind so much. I probably wouldn’t initiate a conversation about it in a professional context, but wouldn’t mind too much if it did come up.

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