Charles Bonnet Syndrome: ‘I can’t believe my eyes’

When someone tells you that they look forward to the day they go completely blind, you tend to listen.

Charles Bonnet Syndrome (CBS) is 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. They can also manifest as shapes or patterns.

Elaine Macgougan, 64, 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, Elaine now has only 15 per cent vision in her right eye. Her sight loss condition is known as retinopathy of prematurity.

As the symptoms of Elaine’s CBS have worsened, she looks forward to the day when she loses her sight completely so she ‘won’t have to deal with hallucinations’.

Elaine 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 is one of crawling insects. Alec Patterson, 55, from Ballymoney described how he looked down to see his daughter’s dinner plate covered in insects. On another occasion, he seen a tiger walking past him as he and his wife walked along a busy city street.

Alec 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.”

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.

As for treatment for the condition, there isn’t one. The focus is on eye care professionals managing the underlying vision problem as well as providing reassurance, emotional support and coping mechanisms such as cognitive behavioural therapy.

The experience of hallucinations can be unsettling for some and intrusive enough that they may not be able to work so having a support network of peers is vital.

Micheál Smith, Campaigns Officer for RNIB NI, urges people with CBS to join a group. He said: “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 are 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 campaigns group comprised of blind and partially sighted people focused on issues in the city of Belfast. If you are interested in joining the CBS group, you can email: [email protected].

For more information visit our Charles Bonnet Syndrome page.

About RNIB

We are the Royal National Institute of Blind People (RNIB).

Every six minutes, someone in the UK begins to lose their sight. RNIB is taking a stand against exclusion, inequality and isolation to create a world without barriers where people with sight loss can lead full lives.

A different world where society values blind and partially sighted people not for the disabilities they’ve overcome, but for the people they are.

RNIB. See differently.

Call the RNIB Helpline on 0303 123 9999 or visit www.rnib.org.uk.