Charles Bonnet Awareness Day

Edwardian gentlemen cycling in plus fours and tweed jackets. I see them disappear through a brick wall.

As part of our Charles Bonnet campaign, which launched last month, we encouraged people to talk openly about their hallucinations.

Today, to mark Charles Bonnet Awareness Day, we wanted to share some of their experiences. 

The campaign aimed to raise vital awareness of visual hallucinations, which occur as a result of sight loss. It sparked a great response and many people shared their experiences.

One lady who told us her story was Thea Gilliard. Thea first found out about Charles Bonnet Syndrome at a Macular Society group, when someone visited to give a talk on the subject.

Thea had previously seen shapes and lattices, but her doctor had dismissed them as a migraine.

She said: “I didn’t say anything to anyone because I thought they would think I was potty. I didn’t even tell my family.”

Overtime her hallucinations progressed and she had several different visions, including a bear outside her kitchen window and two Edwardian gentlemen cycling through her hedge.

She said: “I just couldn’t understand it myself. I was so relieved when I did hear about Charles Bonnet Syndrome. I wasn’t as bonkers as I thought I was.”

Thea said she still struggles to tell her family. “They think it is all in my imagination”, she said.

Another to share her experiences was Audrey Witherford, whose mother was affected by the condition more than 20 years ago.

She said: “She was in hospital and used to say she saw a little dog underneath the bed at night. We just thought she was getting a bit senile.”

Years later Audrey was diagnosed with AMD and soon realised what her mother was experiencing.

Up to half of all people with macular degeneration are thought to experience visual hallucinations at some time. Many worry unnecessarily that there is something wrong with their mind. It is important to understand that the hallucinations are a natural experience and not a sign of mental illness.