Up to half of all people with macular disease experience visual hallucinations, known as Charles Bonnet Syndrome. Many worry unnecessarily that there is something wrong with their mind. But it is important to understand that these hallucinations are a natural experience, not a sign of mental illness.
What do people see?
Charles Bonnet hallucinations can be simple unformed flashes of light, colours or shapes. However, many people see geometrical grids and lattices. Other people also report seeing disembodied heads, Edwardian people, snakes and other terrifying creatures.
As part of our campaign to raise awareness of Charles Bonnet Syndrome, we asked people to share their experiences with us. We received hundreds of stories, some of which are illustrated below:
You can find more examples in our Charles Bonnet eBook, or watch our video below.
The Macular Society has sponsored research by Dr Dominic ffytche at the Institute of Psychiatry in London into non-drug treatments for visual hallucinations. Dr ffytche recommends using eye movements to lessen hallucination impact and length. Eye movements activate visual parts of the brain in people with macular disease, even if they have little remaining vision. These movements may stop certain types of hallucinations, particularly the grids, checkerboards, lattices and colours.
Support and counselling
For many people, it’s a huge relief just to know that what they are experiencing is common in people with sight loss. Having the facts offers some perspective and reassurance, and can be a useful way to introduce family and friends to your experiences.
However, some people can find living with Charles Bonnet syndrome difficult and distressing, particularly if they experience prolonged episodes of graphic images. Counselling can be effective in helping people develop the strategies to cope with their experience. This could be a series of regular one-to-one telephone sessions with a Macular Society counsellor, or you may benefit from joining group sessions.
Delivered by telephone conference call and facilitated by one of our experienced counsellors, group sessions use shared experience to work through concerns. As one client reported, “It’s just so reassuring to know you’re not alone”. For more information and to request a referral, please contact the Advice & Information Service on 0300 3030 111 or email@example.com.