Sussex sight loss group helps people experiencing 'scary hallucinations'

Storrington residents Trixie Piggott, 94, and Shirley McCaig, 84, both live with age-related macular degeneration which affects more than 700,000 people in the UK.

Up to half of all people with the condition are thought to experience visual hallucinations, known as Charles Bonnet syndrome. Some people see shapes and colours and others see animals, people or even disembodied faces.

Shirley, who was diagnosed with age-related macular degeneration in 2013, said: “The first time it happened I was in the kitchen chopping up some vegetables and this gold chain appeared from the left hand side of my eyes. It was just a broken chain with square links in it and I felt really odd. I went and sat down, closed my eyes and then it sort of went away.

“Then I got really worried because I thought ‘what am I going to do if that happens while I’m driving?’ I just about fall into the category of being able to keep my licence.”

Trixie Piggott said she was ‘worried sick’ when she was first diagnosed in 2021. “I wondered if I would have to leave my house and go into a home, there were a lot of frightening thoughts,” she said.

She then started to see patterns in the night and occasionally flies, which weren’t really there. She said: “I would get up in the night and as soon as I put the light on, before I got out of bed, I would look up at the ceiling and I could see enormous shapes up there – big and little ones.

“They’d follow me to the bathroom. It sounds ridiculous, it’s kind of like an illusion and people can all see all sorts of different things so they can be very scary when you first get them.”

Trixie and Shirley were both unaware of why they were experiencing their different hallucinations, until they were able to get information from the Storrington Macular Society Support Group, one of a network of local groups run by the national charity with the help of volunteers across the country.

Trixie, a lifelong Storrington resident, said: “You do think you’re going a bit funny in your head, don’t you? It’s a horrible feeling. It is really worrying but the monthly Macular Society group is very knowledgeable and we had a talk there about these Charles Bonnet hallucinations, so I found that in particular very interesting.

“That put my mind at rest, to know that these visions are something that really can happen to people like me.”

Shirley, a former district nurse, added: “I was scared. I thought, ‘what next?’ But through joining the support group a few years ago, that’s how I first knew about what I was experiencing. Otherwise I wouldn’t have known what was happening to me.

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“A lot of people won’t speak up about it because they do worry that people are going to think they’re crazy so there’s definitely a stigma attached.”

The Storrington support group meets every last Tuesday of the month at the Chanctonbury Leisure Centre, RH20 4PG.

For more information about the group contact Stella Black on 07494 467 980 or email [email protected]