Charles Bonnet Syndrome - 'I’d end up sitting in the corner crying through fear'

Posted: Tuesday 16 November 2021 at 09:43

When Chris was plagued by visual hallucinations, which often left him unable to carry out everyday tasks, he knew he had to do something to overcome the fear.

The 61-year-old has described his hallucinations, known as Charles Bonnet Syndrome, as ‘petrifying’ and said, as well as causing him to fall down the stairs, he has also come close to burning his flat down, as frightening visions have appeared while he’s been cooking.

“People say they aren’t real, but they are real to me,” he said. “I’d end up sitting in the corner crying, or curled up on the sofa through fear.”

How it started

Chris, from Kent, was diagnosed with age-related macular degeneration (AMD) in 2018 but he wasn’t aware the hallucinations were happening as a result of his sight loss. At first he didn’t open up about his experiences as he thought they could be a sign of a mental illness.

On Charles Bonnet Awareness Day (16 November), he has shared his story. 

“Having to deal with losing your sight is one thing and I had ignored it was happening,” he said. “As I tried to get my head around my sight loss, I thought I was seeing things running along the floor like shadows.

“I thought I had a mouse in my flat and things began appearing where they shouldn’t, for example, a great big spider coming out of my book or out of the TV. Again. I thought ‘am I going mad as well as losing my sight?’ So I kept the hallucinations to myself initially.”

When he eventually opened up about the condition, it didn’t make the hallucinations go away, but he did seek comfort in knowing why they were happening.

He said: “It didn’t make living with the syndrome any easier, but it was good to talk and in turn I spoke to my therapist about it. It gave me an idea of what I was going through.”

The impact on everyday life

It can be difficult to live with the hallucinations of Charles Bonnet Syndrome. Chris explained how they come on at any given time and this has an impact on his daily life.

“I have stairs in my flat and it’s happened before where I’ve fallen down them because one of the images has rushed up to me or the handrail has turned into snakes. They’re petrifying and I wouldn’t wish them on my worst enemy.

“When I go through a particularly bad vision I can’t do anything else because they can be so intense and in your face that I couldn’t move. But, it’s not just a fear of Charles Bonnet Syndrome itself. I’ve nearly burnt the flat down a few times because hallucinations have happened when I’ve cooked and there’s been an incident in the bath.

“It really can fill your life with fear. I’m fearful of cooking now so it has a knock on effect that way and in turn that can affect my eating. It affects so many elements of your daily life.”

Talking about Charles Bonnet Syndrome

Charles Bonnet Syndrome causes people with sight loss to see things which aren’t real. It affects up to half people living with AMD and a third will endure silent hallucinations that are distressing, intrusive and interfere with their daily lives.

When the UK was put in lockdown last year, as a result of the Coronavirus pandemic, Chris’ hallucinations intensified further.

However, through sharing his experiences with people at work he was able to begin accepting the condition.

He said: “I had to go in and explain I’d had no sleep and experienced this and that. At the same time it was a great healer because I was verbalising what was going on so people could understand and show me a bit of empathy. It became a bit of fun and the stories of my crazy images each day made their lives a bit happier during lockdown.”

He added: “You can shut your eyes and leave a room and those tips do work but the biggest thing for me was to accept the hallucinations. People had told me to ignore them but that would be me ignoring a part of my life. Once I began to accept them and to understand what the images were, I became less fearful and the images became easier to deal with.

“They’ve not stopped but these images are a part of me and perhaps they have tried or are trying to say something about me,” he said. “I turned the fear into fascination and I wondered what the hallucinations would mean if they could talk to me. What would they say to me? It was a way of acceptance and losing that fear."

Help and support is available

Chris is now part of a number of Charles Bonnet Syndrome support groups which he says have been a ‘lifesaver.’

For Chris, discovering a support network has made a world of difference and he encourages any other people with the condition to reach out.

“The biggest thing from that was there were groups of people who were all in this together and we don’t have to suffer alone. It takes away a small part of Charles Bonnet Syndrome’s power, that you’re not alone, there’s a place to talk and accept what’s happening and that’s so powerful.”

He added: “My advice to others is to join a group and that will stop you feeling alone with it. It’s okay to stand up and say you’re scared, so join the groups because everyone is going through it and they will become your biggest healers."

The Macular Society runs a Charles Bonnet Syndrome support group. This is done over the telephone and provides a chance to speak to other people experiencing Charles Bonnet Syndrome, as well as one of our professional counsellors.

Call the Advice and Information Service on 0300 3030 111 to find out more.

Have you experienced visual hallucinations due to macular disease? If you'd like to share your experiences, get in touch at stories@macularsociety.org

Read more about Charles Bonnet Syndrome.