20 Voices: Amit Patel shares his experience of living with Charles Bonnet syndrome
Doctor Amit Patel from London lost his sight unexpectedly in 2013 and since then he regularly experiences visual hallucinations, known as Charles Bonnet Syndrome (CBS), a common side effect of sight loss.
As a trauma doctor, Amit had a limited knowledge of Charles Bonnet Syndrome before he experienced it himself, having come across it very briefly in his studies at medical school.
He said: “One day, not long after I lost my sight, I was walking down the stairs in my house and this girl suddenly appeared in front of me. I realised it was the girl from the horror movie ‘The Ring’. The hallucination only lasted about four seconds, but it was enough for me to fall down the stairs. At that point I wasn’t really comfortable talking to people about what I was going through in losing my sight and I was very much in my head and in a bad place, so I put it down to that. After a few weeks though this hallucination of the same girl kept appearing and that’s when I knew I was having visual hallucinations and I thought that it may be Charles Bonnet syndrome.”
The kinds of things people see with Charles Bonnet Syndrome is thought to fall into two main types: simple repeated patterns or shapes, such as grids or brickwork patterns; and complex hallucinations of people, objects and landscapes. These can vary from benign to quite alarming - for example, some people report seeing ‘snakes crawling out of people’s heads’ others see children in Victorian dress.
Charles Bonnet syndrome can happen to people with good mental health who have no history of psychiatric problems. Usually, people with CBS are aware – or can learn to recognise – that what they’re seeing isn’t real even though it’s very vivid.
There is currently not enough data to show how many people in the UK have Charles Bonnet Syndrome, but it is estimated to be hundreds of thousands. In spite of this, scientists still do not understand why these hallucinations occur. There is also little awareness about the condition, and those who experience it often report that they were never made aware that this was something common in people with sight loss.
Amit said: “I work with a lot of people who are visually impaired, and yet it’s only when I bring it up and tell people with sight loss that I experience these hallucinations that they’ll admit that it happens to them too. They haven’t heard of CBS before so they don’t want to say anything to their doctor or to their family in case they think they’re crazy. And as a visually impaired person, it can be hard to do that research yourself, you don’t necessarily know what to Google. If consultants and doctors could explain to people that this is something they may experience, that would help a lot.”
The Covid-19 pandemic and subsequent lockdown has only exacerbated Amit’s experience of CBS and he says he has had a lot more hallucinations in the last few months, and particularly in the early days and weeks of the lockdown.
Likewise, campaign group Esme’s Umbrella - which was set up to help support people living with CBS and works closely with Fight for Sight - say their helpline has received double the number of calls over the past five months, with some people saying the stress and isolation they’ve experienced during the pandemic has turned otherwise fairly benign images into frightening ones.
Amit shared his experience of losing his sight unexpectedly and living with Charles Bonnet Syndrome on our podcast, Eye Research Matters. Listen to the episode here:
Fight for Sight is urgently calling for more funding to be invested in vital research for Charles Bonnet Syndrome, which is often misunderstood and can sometimes be mistakenly confused with the onset of dementia. The charity has announced funding for two research projects into the condition with the hope of finding a treatment or cure.