Living with Charles Bonnet syndrome

People living with Charles Bonnet syndrome experience visual hallucinations, usually after a significant loss of vision. This can be a complication from eye diseases such as macular degeneration, glaucoma, diabetic retinopathy, or other eye conditions that cause low vision.

More than 100,000 people are thought to live with Charles Bonnet syndrome (Source: NHS). Due to low awareness of the condition, many people who develop hallucinations after sight loss feel frightened by their symptoms.

Although it can be unsettling to see things that aren't really there, Charles Bonnet syndrome isn't a sign of mental illness. Most people are reassured to learn it's a normal response of the brain to sight loss. The hallucinations tend to improve over time, and there are many practical ways you can limit the impact they have on day-to-day life.

How to deal with Charles Bonnet syndrome hallucinations

Experiencing hallucinations for the first time can be unsettling. It can be very strange to see vivid images, scenes, or even people as part of your surroundings, which aren't really there. It can be reassuring to know this is a normal response of the brain to losing sight. It's an experience shared by many people with eye conditions that have caused vision impairment.

The condition isn't a sign of mental illness, and there are ways to lessen the frequency and impact of hallucinations on daily life. You can try:

• Adjusting the lighting when hallucinations happen. If they tend to occur in darker settings, try turning up the lights. If they happen in a bright room, dimming the lights could help.
• Changing what you're doing when hallucinations happen. For example, get up from sitting to move around and do chores or make a cup of tea. Or you could switch on the radio or television, or move to a different room.
• Moving your eyes. While holding your head still, move your eyes from left to right about once a second, 15 times. You can repeat this up to 4 or 5 times to see if it helps.
• Looking straight at the hallucination and blinking quickly, or even reaching out as if to touch it.

Hallucinations can get worse when you're not well-rested or when you're stressed. If this applies to you, try making some lifestyle changes. The NHS has ideas to help you sleep better and for dealing with stress.

Talking to other people going through the same experience could help you feel better and less isolated. It's also a good idea to tell your family and friends what you're going through. If they learn about the condition, they'll better understand what you're dealing with and be able to support you.

Very occasionally, medicines normally used to treat other conditions such as anxiety or Parkinson's disease can help. Because these medicines can have serious side effects, they're used rarely, for people in distress, and specialists prescribe them.

Support for Charles Bonnet syndrome

Talking about the condition with someone you trust can help relieve some of the worries you might feel, especially early on. It might be hard talking to family and friends about it, but confiding in them could make it easier for them to help you.

If your hallucinations make you feel upset or distressed, you might benefit from counselling with a mental health professional. Speak to your GP about how to get this kind of support.

One of the best sources of support can be speaking to other people living with the condition. You might find it reassuring to hear what it's been like for others who've had similar experiences. They can often suggest tips and resources you might not hear about elsewhere.

• The Macular Society has a Charles Bonnet syndrome support group. Their helpline can put you in touch with other people with Charles Bonnet syndrome and with a professional counsellor.
• The charity Esme's Umbrella campaign for better awareness of Charles Bonnet syndrome and have resources on their website.

Charles Bonnet syndrome and mental illness

One of the aspects of this condition that can be difficult at first is that hallucinations are often associated with mental health conditions or dementia. Your doctor will discuss your medical history and symptoms with you and do tests to rule out other conditions.

But if you're experiencing hallucinations, have experienced significant sight loss, and don't have other symptoms, Charles Bonnet syndrome is a likely diagnosis.

Having hallucinations as a consequence of sight loss isn't a sign of mental illness. People with Charles Bonnet syndrome are usually aware that what they're seeing isn't real, however vivid and extraordinary. This is very different from having delusions, in which the person is convinced what they're experiencing is real. With Charles Bonnet syndrome, you don't hear or feel other sensations, just images you can see.

Can you work with Charles Bonnet syndrome?

Charles Bonnet syndrome tends to be more common among older people with age-related eye conditions who've experienced sight loss. So many people who develop the condition may not be of working age.

However, there are many thousands of working-age people registered as severely sight impaired or sight impaired. If you develop symptoms of Charles Bonnet syndrome, you may need additional support from an employer.

Employers have a legal responsibility to make reasonable adjustments to accommodate your needs. You can speak with your manager about how the condition affects you and the type of support that will work best for you.

Frequently asked questions

The Royal College of Ophthalmologists champions excellence in the practice of ophthalmology and is the only professional membership body for medically qualified ophthalmologists. The RCOphth is unable to offer direct advice to patients. If you’re concerned about the health of your eyes, you should seek medical advice from your GP, optometrist or ophthalmologist.

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