Watch: Belfast woman's 'relief' at going blind to stop terrifying hallucinations

A Northern Ireland woman with a rare condition has admitted that she's looking forward to going completely blind so that her disturbing and terrifying hallucinations will finally stop.

Elaine Macgougan suffers from Charles Bonnet Syndrome (CBS), a neurological condition that causes people with sight loss to experience vivid hallucinations.

These hallucinations are not a sign of mental illness but rather a result of the brain's attempt to compensate for the loss of visual input. CBS hallucinations can be complex and detailed, often involving people, animals, or objects or they can also manifest as shapes or patterns.

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Elaine, 64 and from Belfast, has lived with sight loss since birth and as time has passed and her eyesight has continued to worsen, the effects of CBS have gotten progressively worse.

Having lost sight in her left eye, she now has only 15% vision in her right eye. She said she looks forward to the day when she loses her sight completely so she “won’t have to deal with hallucinations”.

Ms Macgougan said: “It will be a relief. I can get on with the rest of my life without the CBS getting in the way, without the stress of having to second guess everything I see. Now I have so little eyesight that if somebody is sat beside me, it’s like looking at a shape through a thick fog. So yes, it will be a relief.”

A common hallucination with CBS is one of crawling insects and fellow sufferer Alec Patterson, 55, from Ballymoney, has described how he looked down to see his daughter’s dinner plate covered in insects. On another occasion, he saw a tiger walking past him as he and his wife walked along a busy city street.

Mr Patterson said: “We were coming out of a Japanese restaurant when I saw this tiger walking down Royal Avenue, much to the laughter and giggles of my two kids. It was then we started asking questions and I found out that I had Charles Bonnet Syndrome, which now makes life quite interesting.”

This Saturday, November 16th, is Charles Bonnet Syndrome Awareness Day and the sight loss charity RNIB Northern Ireland is attempting to raise public consciousness of the condition. The exact cause of CBS is not fully understood, but it is believed to be related to changes in the brain that occur in response to visual impairment.

Hallucinations can be triggered by low light conditions, sudden changes in vision, or specific eye conditions such as age-related macular degeneration or cataracts. There is no treatment. The focus for eye care professionals is on managing the underlying vision problem as well as providing reassurance, emotional support and coping mechanisms such as cognitive behavioural therapy.

Micheal Smith, Campaigns Officer for RNIB NI, has urged people with CBS to join a support group: “Peer support in disability can help challenge stigma and help people who experience low self-esteem and loneliness. As time went by, the group has evolved from peer support to a campaigning role.

“This group is the first step on the campaigning path and the group is to begin to discuss how their future will look. They have an excellent model to follow after the successful launch in October of the Belfast See Change group – a campaign group of blind and partially sighted people focused on issues in the city of Belfast,” he added.

Further information is available by emailing CampaignsNI@rnib.org.uk.

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