A Victorian girl visits Jon all the time, but he knows she’s not a ghost

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Every day throughout lockdown, Jon Attenborough has been visited by a small, ghostly girl in Victorian costume, who appears at his breakfast table.

‘She’s aged about seven and dressed in a white-frilled school pinafore,’ says Jon, 31, a freelance finance officer and disability campaigner who lives in Perth, Scotland.

‘She has a blank expression but stares straight into my face. Until the first lockdown she only came around three times a week, but since the pandemic she’s come every day.

‘She looks so real that I have to keep reminding myself that I am not going mad but have a medical condition, and that she will eventually disappear.’

Jon has Charles Bonnet syndrome (CBS), a condition estimated to affect between 600,000 and one million people in the UK who suffer from sight loss and blindness.

It triggers vivid hallucinations, and is caused by the visual cortex of the brain (the area that processes visual data) misfiring as it tries to fill in the gaps in information that occur due to this loss of sight.

Although it’s more common in older people, CBS can occur in anyone with poor vision. And it appears to be causing those affected more distress during lockdown. 

The Royal National Institute of Blind People reported calls to its helpline about CBS rose by 67 per cent in January 2021, compared to January 2020.

Dominic Ffytche, a professor of visual psychiatry at King’s College London, says CBS hallucinations are in fact simply an exaggeration of what the brain does normally. 

‘All normal vision is constructed by the brain; hallucinations are just an extension of this process caused by the visual cortex being hyperexcitable’, he says.

Up to 20 per cent of people with moderate vision loss, and 60 per cent of those with severe sight loss, are thought to have CBS at some point.

But since lockdown, half of patients with CBS have reported more episodes, including distressing images such as zombies with blood dripping from their eyes, according to a study published in January in the journal BMJ Open Ophthalmology.

One patient said symptoms were ‘ten times worse than normal’ — and another felt as though he was living in a different house, with ‘people’ everywhere.

Lockdown has been ‘the perfect storm for people with pre-existing CBS getting worse symptoms, as they are believed to be exacerbated by isolation’, explains Professor Mariya Moosajee, a consultant ophthalmic surgeon at Moorfields Eye Hospital in London, who led the research.

One theory is that a lack of social interaction during lockdown may cause people who suffer from CBS to become more introspective and dwell on their hallucinations.

One in three of those surveyed said they experienced worse visions after hearing or reading upsetting news stories.

Visual hallucinations are silent and can be upsetting — axe men, menacing devils, gargoyles with twisted faces and skulls are sometimes described.

But images can also be benign, says Professor Moosajee, who’s heard reports of figures dressed in period or military costumes, Disney characters or colourful flowers growing out of walls.

Not everyone with sight loss experiences CBS, and scientists are still working to discover why.

It’s also not known why people see particular images, but this may reflect the misfiring of signals in a particular area of the brain, ‘such as the one which is responsible for facial feature recognition,’ says Professor Ffytche.

And the images are also highly realistic. ‘One patient I know saw brick wall patterns, and then walked into a real one as his hallucinations had been so similar,’ he adds.

Around two-thirds of those with CBS find their symptoms are eased by reassurance or distraction techniques, such as eye exercises, shifting position and turning on the light. But a third of patients will need treatment; options include talking therapies or medication such as epilepsy drugs.

Recent research suggests that wearing an electrical stimulation device, similar to a TENS machine (used to treat pain in childbirth, for instance), could help.

As there is no specific test for CBS, ‘we rule out other illnesses where people experience hallucinations’, says Professor Ffytche. For instance, with psychiatric problems such as schizophrenia, they will have symptoms such as hearing voices, ‘or if they have dementia, they will have memory problems’.

A lack of data has made it harder for doctors to advise patients. But a survey in 2012 by the Macular Society found that 75 per cent of patients had experienced symptoms for five years or more.

Like many of those affected, Jon had never heard of the condition before he was diagnosed in 2015.

He began losing the sight in his left eye due to glaucoma, where pressure in the eye builds up, damaging the optic nerve. Then he started seeing flowers growing out of the wall in his kitchen.

He has been blind in his right eye from birth due to a rare condition called microphthalmia. 

‘Yet no one had ever mentioned CBS to me before, so I was totally confused,’ says Jon, who uses a guide dog.

On another occasion, he saw a white rabbit sitting on his kitchen table. Too afraid to tell even close family ‘in case they thought there was something wrong with me mentally’, it took him six months to pluck up the courage to talk to his GP, who reassured him the visions were symptoms of CBS.

After an operation a few months later on his left eye, he woke up only seeing dark shadows and shapes.

It was a few months later that the little Victorian girl began to appear. ‘The first time was scary — I froze. I was shocked. At first, she’d only pop up at home, but then she’d appear on a train opposite me or during meetings.

‘Talking to other people who have experience of CBS through charities such as Esme’s Umbrella and the Royal National Institute of Blind People has helped me.’

Jon says since the pandemic began, he has gone out less and has become more isolated.

‘Add to that the constant bad news in the media and it’s easy to see why I have been having more hallucinations,’ he says.

Another patient who has been experiencing more symptoms is 50-year-old Sam Fox, a former bank clerk, who lost her sight due to glaucoma in 2015.

Sam, who lives with her husband Dave, 56, an electrical engineer, and their two children in Southend-on-Sea, counts herself lucky because she finds her hallucinations of brightly coloured Disney characters ‘quite pleasant’.

But during lockdown she’s been having more frequent — and more disturbing — hallucinations, such as ‘a roaring lion’s head and floating skulls right in front of my face, for up to an hour a day a few times a day,’ she says.

Professor Ffytche says: ‘The scary thing about CBS is that people can feel like they are losing their mind.’

Professor Moosajee stresses that it’s important to seek help for hallucinations as they can become worse if people are anxious.

There are two million people with sight loss in the UK, and they need to know this could happen to them, adds Professor Ffytche.

‘They need to be reassured that they don’t have a mental illness, but that their brain is playing tricks on them.’

charlesbonnetsyndrome.uk