30/12/2025
Imagine waking up to find a stranger sitting in your bedroom, or seeing kittens climbing out of your TV, trees growing inside your house, and faces morphing into frightening figures. For 77 year old Janet, these weren’t nightmares, they were her daily reality after being diagnosed with age-related macular degeneration (AMD) in 2019.
Janet was experiencing visual hallucinations due to her sight loss, a condition which is called Charles Bonnet syndrome (CBS). Up to half of all people with macular degeneration are thought to experience visual hallucinations at some point.
“At first we thought I was hallucinating because of an unrelated medication I was on, but these hallucinations didn’t stop. Months later I had it confirmed I was seeing things because of my eyes,” Janet explains. “I really couldn’t understand why other people weren’t seeing what I was seeing.”
It was seven months before Janet went back to her optician, where she was told that the visions were the result of CBS.
“I knew something was wrong but I thought I was going mad so thank goodness for the optician who told me straight what was happening,” said Janet.
But Janet has found hope through the Macular Society and wants others to know they don’t have to face this alone:
“It’s really surprising that this isn’t talked about more. Hallucinations are a big thing to deal with, on top of losing your sight. It’s important to get as much information as you can, and the best thing is to really be open and talk to someone about this. I had to find out a lot myself, and it’s thanks to the Macular Society and all of the tips it has given me that I feel a lot better now.”
If you or someone you know is experiencing visual hallucinations alongside sight loss, know that you’re not alone. Visit our website for more information or reach out to our helpline if you need support. You can email us at [email protected] or call 0300 3030 111.