A veteran who saw “ginormous spiders” coming towards him as his vision declined is encouraging others to make use of a new dedicated support line.
John Baptie said he went “through hell” after he began showing signs of Charles Bonnet Syndrome (CBS) – even thinking he had dementia and making his own funeral arrangements.
Since being diagnosis with the condition – which causes visual and silent hallucinations in people of all ages – Mr Baptie has received support from Esme’s Umbrella.
The charity has now teamed up with Sight Scotland Veterans to offer more specific assistance to former service personnel and has launched a telephone support group known as Esme’s Friends.
The scheme has been launched after the charities noticed an increase in the number of veterans struggling from sight loss or visual problems during the pandemic.
It is the first Esme’s Friends CBS support group in Scotland, although 26 already run in England.
“I thought I was haunted”
Mr Baptie, from Inverness, has taken part in the calls and is encouraging other veterans to reach out if they need help.
The 72-year-old started experiencing CBS in 2013 and was unaware of the condition at the time, and said he thought he was “losing his mind”.
“I’ve had sight loss in my left eye for a long time, and CBS only started bothering me when I started losing sight in my right eye,” he said. “When it started happening, I did not understand what it was.
“I went through hell thinking I had dementia and that things were going to get worse. I even paid for my funeral because I thought that was it.
“I would be sat down and see ginormous spiders coming towards me. I’d see spiders floating through air coming towards me. I would see people dressed in black and when I approached them, I couldn’t see their faces – that made me think I was being haunted. When I was looking at something I’d swear it was moving, even though I knew it wasn’t. Even when I’d go out on a walk and I knew where I was going, I would get lost. When you don’t know what it is, you think you’re going mad.”
Through Sight Scotland Veterans, Mr Baptie came to learn about CBS and benefits from the peer support from Esme’s Friends.
He praised the charities and said: “It’s a great relief to know that Sight Scotland Veterans and Esme’s Umbrella have taken up the gauntlet with this.
“People see sight loss and blindness, but they don’t understand the complex things that can go a long with it, like CBS.
“The more CBS is brought out into the open and more people understand what it is, the better.”
Esme’s Umbrella was launched in 2015 by Judith Potts in memory of her mother, who was plagued by CBS in her final years. It not only supports sufferers, but provides funding for research.
Ms Potts said: “Since the naturalist and writer Charles Bonnet first documented the condition in his grandfather in 1760, there has been very little understanding – and too much misdiagnosing – of CBS. Too few doctors are warning people that CBS might develop.
“Consequently, far too many people are left to think – wrongly – that their vivid, silent, visual hallucinations are caused by a mental health condition.”
During the pandemic, some individuals supported by Sight Scotland Veterans experienced more or changing CBS hallucinations. The Esme’s Friends group now supports those service users.
Sandra Taylor, Sight Scotland Veterans lead rehabilitation officer, said: “The Esme’s Friends group calls have successfully provided a safe, warm and understanding space for veterans with sight loss we support to share with their experiences and feelings about CBS, as well as tips for how to cope. Many had been unaware of CBS for so long, and now understand the reason for the hallucinations. They know they are not alone in living with the condition.”
- Esme’s Umbrella Helpline is 0207 391 3299