Bernadette Glass said her “biggest fear” was not being believed when she started having visual hallucinations three years ago.

The 74-year-old retiree lives with glaucoma and said she saw disembodied faces, dogs and people in military uniform in her home.

“It wasn’t in the least bit frightening,” she said.

“I knew deep down that whatever I was going through, it was not a psychiatric illness.”

Ms Glass said she was “too frightened” to tell her GP, and after six months of searching for answers online, she self-diagnosed with Charles Bonnet Syndrome.

When she talked to her ophthalmologist about the condition, she said she was dismissed.

“All he says to me is, ‘It’s a very rare condition,’ and that was it,” she said.

“There isn’t much in the way of education that was given to me, so you’re left to … look it up yourself.”

a professional photo of a man in a suit

Scot Muirden wants universal guidelines to diagnose and treat Charles Bonnet Syndrome. (Supplied)

Scot Muirden, director of the Charles Bonnet Syndrome Foundation Australia, said the condition describes the “co-existence of two visual worlds” for people living with a vision impairment.

“They may be experiencing areas where there’s blurriness, other areas of the visual field they can’t see at all,” he said.

“Then suddenly … phantom images will be superimposed on that baseline.” 

Fluorescent hair and storm clouds

According to Mr Muirden, Charles Bonnet Syndrome hallucinations are colourful and detailed, but people “rapidly” understand what they’re seeing is not real.

He said hallucinations commonly involve patterns and geometric shapes, as well as fully formed animals, vehicles, buildings and landscapes.

A woman with grey hair smiles in front of a book shelf

Vicky Hamilton said she has experienced visual hallucinations for years. (ABC News)

Griffith University student Vicky Hamilton said she spent a decade searching for answers to her visual hallucinations.

“If I looked at people, their hair would change into very fluorescent colours,” she said.

“I’d have storm clouds just appear in the sky even though it was a beautiful, clear day.” 

She said tests eventually revealed a brain aneurysm was pressing on her optic nerve, following an assault she experienced two decades ago.

While one doctor agreed her symptoms aligned with Charles Bonnet Syndrome, she said another downplayed her concerns.

“She dismissed my visions, claiming, ‘You are seeing them because you want to’,” she said.

“Before discovering the aneurysm, another doctor trivialised my symptoms by suggesting I watch a movie to feel better.

“I felt that he did not believe me.”

A woman's face partially covered by grey hair looks down in front of a book shelf

Vicky Hamilton says she received mixed responses from doctors about her visual hallucinations. (ABC News)

She said discovering Charles Bonnet Syndrome made her visual hallucinations seem “less scary”.

“It can be very beautiful too,” she said.

Ms Hamilton said while her brain aneurysm had fully healed and her vision had improved, she still saw floating colours.

Both Ms Hamilton and Ms Glass said self-diagnosis brought great relief, after years of searching for the cause of their visual hallucinations and being turned away by numerous doctors. 

But both felt frustrated doctors could not give them clear answers, instead dismissing their concerns. 

Condition is under-reported

Charles Bonnet Syndrome was first described in the 18th century by Swiss scientist Charles Bonnet, but the term wasn’t officially coined until the 1930s. 

According to Mr Muirden, a lack of awareness was causing a rise in self-diagnosis and misdiagnosis.

“Most [people] have never heard of CBS,” he said.

“That’s why it’s so under-reported, because the patients are terrified to talk about it, and the medical practitioner is not … asking about it.

“They’re not screening for it. They’re not enquiring whether [patients] may be showing the symptoms.”

A woman sits at a desk with two computer screens

Meri Vukicevic says Charles Bonnet Syndrome was “very under-reported”.  (ABC News: Peter Drought)

La Trobe University Associate Professor of orthoptics Meri Vukicevic said the condition was “very under-reported” and under-recognition was common.

“The gap is big enough that RANZCO [Royal Australian and New Zealand College of Ophthalmologists] explicitly warns about it and recommends proactive screening,” she said.

“Patients … are very reluctant to speak to anybody about it because of fear of being labelled insane or psychotic, which they aren’t.

“They are hallucinations in psychologically normal people.”

Mr Muirden said he was calling on peak medical bodies to create universal, evidence-based guidelines to diagnose and treat Charles Bonnet Syndrome, because none currently exist in Australia or internationally.

“This could cut out months, even years of unnecessary anxiety, suffering and silence that so many in the CBS world go through,” he said.

Ms Vukicevic agreed guidelines for diagnosis were “very important.”

“The eye healthcare practitioners would have a large role to play here,” she said.

“We could possibly all band together and put together some guidelines that would be of benefit to all of our patients.” 

A spokesperson said RANZCO had developed a position statement on Charles Bonnet Syndrome in 2023, to provide guidance on the “diagnosis, treatment and management” of the condition.

Ms Vukicevic said the statement was the “nearest thing” to a guideline eye health professionals in Australia could use, but they weren’t routinely screening their patients for hallucinations.

“I am not sure how frequently this position statement is being accessed by eye health practitioners,” she said.

“I suspect not very often.”

A man stands holding a can on a timber jetty in front of boats in the water with hills in the distance

Theo Blue says more awareness about Charles Bonnet Syndrome is needed. (Supplied: Theo Blue)

A recent meta-analysis by Brain Research Bulletin of 49 Charles Bonnet Syndrome studies found the condition affects about 10 per cent of the vision impaired community globally.

Canadian peer-support worker Theo Blue lives with glaucoma and said Charles Bonnet Syndrome was “very manageable”, but elderly people may feel more vulnerable.

“Losing my vision is all I know,” they said.

“It can be very jarring to have this come up … later in life, losing their vision for the first time.

“It’s really important for the elderly and their doctors to be aware of what CBS is.”