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Judith’s Update May21 – The Impact of Covid 19 on People who live with CBS

Coping with Covid-19 a woman wearing a mask

As we slowly emerge from the latest – and I hope last – lockdown of the pandemic, it is time to reflect on how COVID 19 has impacted on those who live with Charles Bonnet Syndrome (CBS). 

The first few weeks of lockdown – ‘hallucinations go berserk’

The number of calls to the Helpline, emails to my inbox and messages on my Facebook page all doubled. 

We have always known that stress, isolation and fever cause an upsurge of CBS episodes, but what came as a surprise were the reports of much more frightening images being experienced during lockdown. 

It became clear that even more people than usual who live with CBS, were struggling to work out what was real and what was an hallucination.

Describing the change in his CBS, one young person told me “my hallucinations have gone berserk”.

Distress for families and 999 calls

Not only did the change in the CBS experience cause great distress to the person living in a world of vivid, silent, visual hallucinations, but for relatives – unable to visit – it was particularly troubling. Perceived images of people in the house, gushing water or fire caused many a call to the emergency services and isolation rules had to be broken by anxious relatives or friends.

Esme’s Friends’ telephone/online chat and support groups 

Prior to the pandemic, there were many sight loss charities running Esme Room Support Groups. Obviously, these had to close and we morphed them into ‘Esme’s Friends’, allowing people living with CBS – and their families – to chat together, exchanging experiences and coping strategies via video or audio calling. There are now 22 of these in the UK.