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Finding solidarity and support through Esme’s Friends

Charles Bonnet Syndrome Awareness Day

Charles Bonnet Syndrome is a condition associated with sight loss, which causes visual hallucinations. Sometimes these visions may depict patterns, but sometimes they can be more frightening – such as malnourished children, people dressed in Victorian clothing, or worse. While some of these hallucinations may just be annoying, some can be terrifying.

Even though the condition was identified three hundred years ago, not much is known about it, and knowledge among healthcare professionals, even those working in sight loss, can be hit and miss. However, the charity Esme’s Umbrella is working hard to raise awareness of the condition and support people living with it through groups like Esme’s Friends.

For Charles Bonnet Syndrome awareness day (November 16) London Vision spoke to Chris Ward, who attends London Vision’s regular Esme’s Friends CBS support group. He told us about his journey with the condition, and some of the coping mechanisms he and other members of the support group use.

Chris Ward

Chris Ward lives in Kent, and volunteers with rough sleepers in Gravesend.  He attends the regular Esme’s Friends telephone support group on Thursdays.

Chris’ journey to understanding his Charles Bonnet Syndrome was marked by an all too common lack of knowledge and understanding of CBS the condition from his GP. After being diagnosed with dry macular degeneration in his right eye, and wet macular degeneration in his right eye, he began to develop the symptoms of CBS.

Mental health and CBS

Like many people who have recently received a diagnosis of irreversible sight loss, Chris’ mental health took a hit. Learning to live with his decreasing sight was already a lot to cope with, but the onset of visual hallucinations had a huge negative impact on his emotional wellbeing. Unfortunately, the lack of knowledge around the condition meant that his doctor advised that he try antidepressants – a common medical response to a presentation of CBS symptoms.

Unsurprisingly, the antidepressants did nothing to alleviate the symptoms of CBS. But luckily Chris learnt that the CBS was part of his sight loss and was advised to join a CBS support group through a friend at Kent Association for the Blind.

Esme’s Friends

Once Chris was told about and started attending the groups, there was no need to call a doctor about his CBS. His healing and therapy came from the groups, from the discussions about coping mechanisms, and from the support from other people.

Attending CBS support groups has been the “most important kind of therapy that you can get for CBS”. Even if you do not want to speak, they are a space where just listening to other people can be healing.

People who have just been diagnosed with sight loss are experiencing fear, and a significant change in their lives as a result.

“You’re coping with your sight loss, and then you are hit with this other thing that makes everything quite scary. The emotional impact of CBS is often forgotten, and unfortunately, with doctors – what they see they try to fix, and what they can’t see they disbelieve”.

For example, Chris has regular appointments with his consultant to treat his wet AMD, and he has brought up his CBS, only to be told that because it is not “real” he should just ignore it. Sufferers of CBS know this is easier said than done.

Solidarity and support through talking

In our chat, Chris points out one of the most crucial points about CBS – if more doctors were aware of what happens during sight loss, then they would be able to direct people to groups and not just prescribe medication.

These groups bring more than just support to people living with CBS – they provide solidarity. They are a safe space to talk about feeling scared, and everyone there knows exactly what the condition is and the impact it can have. This is crucial in alleviating the feelings of loneliness and fear that sufferers can feel.

Tips for coping with visual hallucinations

Tips from Chris and attendees of Esme’s Friends for preventing or alleviating CBS hallucinations, these may only be short lived in their impact.

  • Keep your mind busy: go for a walk complete a task listen to a book, engage in conversation with another person
  • Try something mindful – try the Headspace app
  • Treat yourself to something nice
  • Prayer
  • Distract yourself with aromatherapy oils: use an electric burner to avoid naked flames
  • Worry beads or objects to fiddle with can work
  • Point at the hallucination
  • Look away
  • Blink rapidly
  • Shout at the hallucination (when appropriate to do so)
  • Use music as a distraction
  • Talking to other people who have experienced something similar
  • Meditate – use Alexa headspace skill
  • Music can be a distraction
  • Ginger products can alleviate symptoms

If you or someone you know is suffering symptoms of Charles Bonnet Syndrome, please get in touch, and check out the London Vision CBS support group page to find out when the next support session is taking place.

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