“I couldn’t understand why other people weren’t seeing what I was seeing”

Posted: Sunday 16 November 2025

Janet smiling as she sits in her armchair at home

Being the only person to see kittens climbing out of her TV, trees growing inside her house and people sat in her bedroom was an alarming experience for Janet after she was diagnosed with age-related macular degeneration.

At first, she thought it could be linked to some medication she was taking but after months of seeing things that weren’t there she was relieved to be told this was due to her eye condition.

Janet was experiencing visual hallucinations due to her sight loss - a condition which is called Charles Bonnet Syndrome (CBS).

She said: “At first we thought I was hallucinating because of an unrelated medication I was on, but these hallucinations just didn’t stop. Months later I had it confirmed that I was seeing things because of my eyes.

“I really couldn’t understand why other people weren’t seeing what I was seeing and I've gone on to see some horrible things. It was very frightening at the beginning not knowing why I was seeing faces and people – I think they have been the worst.”

Janet, 77, was diagnosed with age-related macular degeneration (AMD) in 2019.

Morphing faces and scary figures

Up to half of all people with macular degeneration are thought to experience visual hallucinations at some time.

Charles Bonnet hallucinations can be simple unformed flashes of light, colours or shapes but other people see more elaborate forms including animals and disembodied heads.

Janet said: “There was a kitten which climbed out of the TV and sat on the floor next to me. I put my hand down but I couldn’t feel anything of course, and I’ve had trees growing in the house, people’s faces changing and morphing with bright lights. They are awful, with their chins sticking out and the eyes go funny. They looked horrendous.

“I have started having hallucinations day and night and I have woken up to a woman sat in my room. She didn’t even try to speak, just looked at smiled at me before she disappeared and there I was clutching at the duvet and backing up. It was very scary.”

While hallucinations can be frightening, Janet has also found humour as she described being ‘visited’ by elves.

She said: “Sometimes they can be funny. For example, I had two little elves on a seesaw dressed in red sequined costumes. They were just going up and down on this seesaw and then all of a sudden they just shot across the room. When they’re like that, you can’t help but laugh at them, but I’d rather not see any hallucinations at all.

“And at times it is like my house if full of trees, growing out of the sofa, out of cupboards, it’s like a forest in my own home which was remarkable.”

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.

“It was a shock to be told it was because of my macular condition, I thought ‘this can’t be happening to me’ and I’d never heard of it. Since then, my sister-in-law had actually started getting these hallucinations too, and she was eventually diagnosed with macular disease as well. She'd been seeing animals particularly, only at night.

“I have come to laugh about it because it stops you crying, doesn’t it? I did my crying when I was diagnosed with macular disease, when I was told I was losing my sight because it was a lot to deal with.”

‘I cried for a month after my diagnosis’

Janet had been at a routine eye test when AMD was picked up.

She said: “I thought I could cope with anything as long as I can still see, so I definitely wasn’t in a good place when I started to find out more about AMD.”

She continued: “I was really upset for that first month. I cried a lot because eyes are precious and going through this was a big change. In time you can accept it, or at least reach some sort of acceptance. I've accepted it and know I have to change how I go about things, because that’s what it comes down to.

“Reading is my passion and I’ve bought a special lamp to give me more light, and a magnifier.”

‘I’m not alone’ – joining the Macular Society community

Janet saw advertisements for the Macular Society and joined to find out more about her condition.

“I want to have as much information as possible. I wanted to be prepared,” she said.

“I’m coping a lot better now I know more about macular degeneration, and all the research that goes on and that’s thanks to the Macular Society where I know there are people I can reach out and talk to, ask questions.

“I feel a lot better knowing that there's a charity out there to help me, because when you find out about this disease, there's not much we can actually do medically. I felt lost but since I joined the Macular Society, I know I’m not alone.”

Janet has since learnt to manage her hallucinations when they do appear, thanks to information she has picked up. As a result, she encourages others to find out more about talk about their experiences.

She said: “It is 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 so important to get as much information as you can, and the best things 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 for all the tips it has given me that I feel a lot better now.

“To find out that there is actually help out there as and when I need it, that did me a world of good. Find out as much as you can about it because once you do, none of this is anywhere near as frightening.

“So as long as I continue to get the information I need for living with this condition, and advice for managing my hallucinations, then I’ll keep on carrying on.”

Understanding Charles Bonnet Syndrome

Macular Society Helpline

Free information and support to those with macular disease, along with their family and friends, to help people retain their independence.