Adventures With Charles Bonnet Syndrome

As my vision has deteriorated, I had sometimes seen things that I am sure did not exist. I was not sure what was happening, why it was happening and if I could stop it. Luckily, I attributed it to my sight loss and didn’t think I was going mad!

When I started working at OAB I had no idea that what I experienced was something completely normal that had a name and support networks. Back then, my colleague Ellie told me about Charles Bonney Syndrome and ir all made sense.

Once I had the name of the syndrome I was able to find out a lot about it including what it is and how much help there is out there.

The NHS website defines details

“Charles Bonnet syndrome causes a person whose vision has started to deteriorate to see things that aren’t real (hallucinations). The hallucinations may be simple patterns, or detailed images of events, people or places. They’re only visual and don’t involve hearing things or any other sensations.”

For me, these ‘hallucinations’ have manifested in a range of ways. Most often it creates an array of white swirls around where my central vision would have been. I see these every day, most commonly when I close my eyes.

However, I have seen things in more detail. I first nticed it when walking around at night and I would see cyclists appear from nowhere and would jump out of the way. It must have been very strange to anyone who could see me at the time. It got even stranger for me when I started seeing them in places where I knew cuclists couldn’t even be, like my office or my living room.

Thankfully I no longer see intrusive cyclists but every now and then I see a small black dog that looks like my guide dog on the stairs when I know she isn’t there, or a couple of times I have seen a person very briefly at the bottom of the stairs in my house.

At first, the hallucinations would shock and scare me as I was seeing things I was not expecting to hear, but there days I am more or less used to it. I am aware though that others sometimes see things more vividly and for more prolonged periods.

Karren Visser, a VI photographer and OAB client, told me about her experiences of CBS.

“A small brown puppy lying in the road that turned itself into a McDonald’s paper bag when I walked nearer was one of the first times I became aware that what I thought I saw was not in fact there.

The occurrences are more frequent after further deterioration in my eyesight. I have degenerative myopia.

I tend to see small animals and little children, mostly in a situation where they could be at risk of being hit by traffic, harmed by a passerby knocking into them, or they stand out by being alone in an unusual place. The panic of wanting to help them and at the same time my sense that what I see before me may not be real leads to a frantic internal dialogue. This subsides when I am about 1 meter away as I register that the vulnerable child or animal are in fact a piece of litter, leaf debris in a gutter, or a shadow.”

Karren also sent us a photo that encapsulates how she experiences Charles Bonnet Syndrome.

© Kazem Hakimi

She says “This is a photograph of a young girl in a red summer’s dress standing against a white wall behind obscured textured glass with light extending from the top left corner. Her arms are straight and tight against her body and her hands cross in front of her causing the dress to ruche down the middle.”.

I have heard many stories from friends and clients and people both experience and react to it differently. Some are very humble about it and are used to what they see, but some have described visions that are terrifying to them. Thankfully there is help out there. For more information you can go to the links below.

You are always welcome to get in touch with us if you want to talk about it or share your experiences.

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