Storrington Sight Loss Group: Helping people who experience ‘scary’ hallucinations

an old person's eye and a young person's eye

The Macular Society: Storrington Support Group

Age-related Macular Degeneration (AMD) affects more than 700,000 people in the UK.

Recently The Storrington branch of The Macular Society has helped two local residents, both living with AMD and who have experienced “scary” visual hallucinations, to understand their experiences.

Up to half of all people with the condition are thought to experience visual hallucinations, known as Charles Bonnet syndrome (CBS). These visions present themselves in many forms with some people seeing shapes and colours, to others seeing animals, people or even disembodied faces.

One local lady, who was diagnosed with AMD 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.

She said she was “worried sick”, when she was diagnosed with AMD in 2021. “I wondered if I would have to leave my house and go into a home, there were a lot of frightening thoughts, it was a frightening thing to be told”, she recalled.

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 littles 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.”

Both ladies were unaware of why they were experiencing their different CBS 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.

One of the ladies helped 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.”

The other lady 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.”

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. It is a space for people to share information, encouragement and friendship with others affected by sight loss. Different speakers are invited to chat about a range of topics and people can simply enjoy a get together over a cup of tea.

As one of the ladies who the Group helped said, “The support group is a good way to keep up to date with information and being part of one means you can get far more knowledge than being on your own.”

I’m certainly very grateful for what I have learned from the group.

Macular disease is the biggest cause of sight loss in the UK. Nearly 1.5 million people are currently affected and many more are at risk. The disease can have a devastating effect on people’s lives, leaving them unable to drive, read or see faces. Many people affected describe losing their sight as being similar to bereavement. There is still no cure and most types of the disease are not treatable.

For more information about the Storrington support group or to become a volunteer, contact Stella Black on 07494 467 980 or email stella.black@macularsociety.org

For more information on macular disease, call the Macular Society on 0300 3030 111 or email help@macularsociety.org

Please reach out if you need any more information.

https://www.macularsociety.org


Submitted to the Storrington Community Website using the Event contact form.

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