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VOICES

'What was particularly scary about these voices is I am deaf and don’t normally hear people talking'

Karen Sinnott writes about her struggle to get treatment – and her journey to the UK.

THE FIRST TIME I heard voices, I was 17 years old and in hospital receiving treatment for depression. They came out of nowhere – it was as if there were people talking behind me, except there was no one behind me.

People think that when you hear a “voice in your head” it will be distorted or sound strange but these voices weren’t like that. It was as if there were two men talking just behind my back, men I didn’t know.

What was particularly scary about these voices is I am deaf and don’t normally hear people talking with such perfect clarity.

I couldn’t understand what these voices were and why I was able to hear these two men. I became scared, thinking that people could somehow read my mind, take my thoughts and know everything I was thinking.

I told my doctor but he seemed to just laugh it off. His reaction put me off telling anyone else and it would take me another eight years to find out that even deaf people who have schizophrenia hear voices.

ISL

During this time, I struggled with depression and suicidal feelings – which I sometimes acted upon. I was in and out of the Emergency Department and psychiatric care, staying in various mental health units in Ireland.

It’s well known that many people with mental health issues struggle to access adequate treatment in Ireland but, as a deaf person who relies on Irish Sign Language, it has been a nightmare for me.

None of the psychiatrists or mental health staff in these units could sign, and my requests for Irish Sign Language interpreters were more often ignored than heeded.

Irish Sign Language (ISL) is my first language – it allows me to express my innermost thoughts and feelings.

While I can lipread and speak, it’s an effort to do so and I cannot articulate what I am really thinking, and when I am in the throes of depression or psychosis, it becomes almost impossible to engage with someone through spoken English.

The key to successful mental health care is good communication.

With a physical illness or injury, the diagnosis is by sight and touch, but with a psychological illness, diagnosis is through therapy – and therapy is reliant on good communication. For me, this means therapy in ISL, not English.

Within some of the psychiatric units, I was able to get interpreters but it would be for a half-hour appointment with the psychiatrist. For the rest of the day I had to adapt and try to understand those around me.

Peer support is a big part of recovery but I found it hard to engage with other people when I was in hospital. I was encouraged to go to group therapy without an interpreter – but I had no idea what people were saying. In the end I just walked out.

I also found it hard to engage with my diagnosis – personality disorder, as diagnosed by four different psychiatrists. I just never felt it was right yet my treatment was based on this diagnosis.

In hospital I’d see other patients come and go, responding to treatment quicker than me, and getting back to their lives whereas I was being held back. It’s had a huge impact on my life – for example, I started Equality Studies in UCD but haven’t been able to finish my course.

But then came the glimmer of hope! Frustrated with the lack of progress in my recovery in Ireland, I did some research and found out there was an in-patient deaf service in London. All staff at the clinic in south London were deaf and/or could sign. This sounded like exactly what I needed.

I asked the psychiatrist I was under at the time whether I could get a Treatment Abroad Fund grant to go but was discouraged from applying. Last year, I asked another psychiatrist – one I had been seeing for two years – whether she would help me apply for funding to go to London. She was dubious until I asked her if she thought I had made any progress under her care.

It took a few months but eventually the funding was approved and a week later I was flying over to England.

Arriving at the ward was overwhelming. Psychiatrists, other staff including nurses and fellow patients all signed in British Sign Language (BSL). This was exactly what I had been looking for, what I needed: deaf peers who understand what I am going through; staff who sign and understand how mental health affects deaf people.

It’s a place where I no longer feel “deaf” or “disabled”.

Fortunately I already knew British Sign Language and after just a few days in this environment, I found myself opening up about the voices that had been following me around since I was 17.

Unlike that doctor I told eight years ago, the psychiatrist understood how mental health disorders affect deaf people. As a result, within a few weeks of arriving in London, I was diagnosed with schizoaffective disorder. Finally, a diagnosis I could connect with.

At last the anxiety around access to my healthcare is over and I’m now free to focus on my treatment and recovery.

I am not the only deaf person who has had to travel from Ireland to the UK to receive mental health treatment. Mental Health Reform describe deaf people as a group at high risk of mental illness but one of the least well-served by the HSE.

Currently, the Recognition of Irish Sign Language for the Deaf Community Bill is currently working its way through the Seanad Éireann. Campaigners believe if it is passed it would copperfasten Deaf people’s right to access healthcare in their preferred language.

My own journey has made me stronger and while I will always have this illness, with my treatment I am now learning coping mechanisms which will help me live with it. While I don’t know what lies in store for me after here I have been encouraged by staff here to consider studying psychology.

But one thing I do know is I want to use my experiences to help other Deaf people so that no-one else has to go through what I did.

Born-Deaf Karen, from Wexford, learned Irish Sign language at school. She has had difficulties with her mental health since she was 15. 

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