Charity partners with veterans in support of little-known loss of sight condition
An A Sight Scotland Veterans and Esme’s Umbrella telephone support group supports veterans with sight loss in Scotland who suffer from a little-known condition resulting from vision loss and causing visual hallucinations – Charles Syndrome Bonnet (CBS).
The Sight Scotland Veterans charity has partnered with CBS campaign organization Esme’s Umbrella to offer the CBS ‘Friends of Esme’ support group to users of the Sight Scotland Veterans services by phone after the team The charity’s rehabilitation center noticed that some veterans with sight loss told them about increased or changing CBS experiences during the pandemic.
Charles Bonnet syndrome is a common condition that can affect people of any age who have vision loss. The disease causes visual and silent hallucinations following the loss of sight. Hallucinations vary widely from person to person, with some people seeing images of everyday objects while others may experience disturbing or even terrifying hallucinations.
This partnership Sight Scotland Veterans and Esme’s Umbrella is the first CBS ‘Friends of Esme’ support group in Scotland. Esme’s Umbrella already operates 26 helplines in England, in partnership with charities in England, for people dealing with CBS.
Some veterans with sight loss who participated in calls from Esme’s friends have been silent for years about their experiences, ignoring CBS and its connection to sight loss and therefore fearful that the hallucinations are signs of mental illness, dementia or even paranormal hauntings.
Army veteran John Baptie, 72, of Inverness, participated in appeals from Friends of Esme. John started suffering from Charles Bonnet syndrome in 2013. Ignoring the illness at the time, he says the early years were “hell” because he thought he was “losing his mind”.
âI found the Friends of Esme sessions to be a great help because you can talk to people with similar experiences. I never got to tell anyone about it because you feel like you don’t want to draw attention to yourself.
âNo one had ever told me about Charles Bonnet syndrome before, not even at the eye clinic. It really came about with the support of Sight Scotland veterans. I now realize that these things that I see are not real. As soon as I realized it, I felt good.
âI have had loss of sight in my left eye for a long time and Charles Bonnet syndrome only started to bother me when I started to lose sight in my right eye. When it started to happen, I didn’t understand what it was. I thought I was haunted. 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 it was it.
âI would sit and see giant spiders coming towards me. I saw spiders floating in the air coming towards me. I saw people dressed in black, and when I approached them, I couldn’t see their faces. It made me think I was haunted. When I looked at something, I would swear it was moving, even if I knew it wasn’t. Even when I walked around and knew where I was going, I got lost. When you don’t know what it is, you think you are going crazy.
John says calls from Esme’s group of friends have given him a network of peer support when he needs to talk about Charles Bonnet syndrome.
âIt’s a great relief to know that Sight Scotland Veterans and Esme’s Umbrella have risen to the challenge with this. I am also very satisfied with the support from my eye clinic. People see loss of sight and blindness, but they don’t understand the complex things that can come with it, like Charles Bonnet syndrome.
âBy sharing my experiences, it’s good to maybe also be able to help others because I don’t want them to go through what I’ve been through. The more Charles Bonnet syndrome is exposed and the more people understand what it is, the better.
Esme’s Umbrella was launched in 2015 by Judith Potts in memory of her mother, for whom CBS tormented her later years. The campaign raises awareness of the SCB; creates ways – such as the Friends of Esme service – to support those who develop the disease; and sources of funding for research.
Judith Potts, Founder of Esme’s Umbrella, said:
âSince naturalist and writer Charles Bonnet first documented the disease in his grandfather in 1760, there has been very little understanding – and too many misdiagnoses – of Charles Bonnet syndrome. Too few doctors are warning people that CBS could develop. As a result, far too many people think – mistakenly – that a mental health issue is causing their vivid, silent visual hallucinations. “
Sight Scotland Veterans Rehabilitation Manager Sandra Taylor said:
âDuring the pandemic, some people supported by Sight Scotland veterans told us they had experienced more or more changing CBS hallucinations. Because CBS is still such a little-known disease, awareness of CBS and its effects plays a vital role in overall support for sight loss.
âThe Friends of Esme Group Calls have successfully provided a safe, warm and understanding space for veterans with blindness whom we support to share their experiences and feelings about CAS, as well as advice on the way to cope. Many had ignored CBS for so long and now understand the reason for hallucinations. They know they are not the only ones living with the disease.
For more information and help with Charles Bonnet Syndrome, please visit: charlesbonnetsyndrome.uk or call the Esme’s Umbrella hotline on 0207 391 3299.
Call 0800 035 6409, email [email protected] or visit Sightscotlandveterans.org.uk to find out more about supporting veterans who have lost their sight in Scotland.