By Jule Ann Lieberman CLVT/CATIS and the Vision Loss Resource Team
“I was afraid to tell my doctor that I was seeing things that were not really there,” states a woman in her 70’s. She adds, “No one believed me, they assumed I was having a mental breakdown of sorts.” Her experience although uncommon in the general population was not a sign of mental illness, but rather a condition that is frequently misunderstood by persons experiencing vision loss, their loved ones and the medical community.
Charles Bonet Syndrome (CBS) causes visual hallucinations as a result of sudden onset vision loss and can occur at any age; however, it is observed most often with persons who lose their vision later in life. Some research suggests that 1 out of 5 persons who experience vision loss from macular degeneration, cataracts, glaucoma and diabetic retinopathy may experience these visual hallucinations.
This experience can be quite confusing, frightening and can lead to anxiety. With older adults, the hesitance of explaining these images can stem from being afraid of a diagnosis of dementia or another mental illness. Fear of describing these experiences can increase isolation and anxiety which can lead to multiple poor health outcomes.
“I was told that I had macular degeneration and that nothing can be done and just to stop complaining, crying and being depressed and go on with my life.” This is frequently the experience of those who speak up to medical professionals about their visual hallucinations.
Charles Bonet, a Swiss philosopher and writer, first observed this condition with his grandfather over 250 years ago. Images of repetitive patterns, birds and animals that were not really there were reported by his grandfather. Even though CBS has been around more than 250 years, many including the medical community fail to recognize this as a possible result of vision loss to this day.
What may be “going on” is that the brain is trying to fill the void where the eye provided vision previously. The eye is not the single component of vision, the brain interprets the signals sent from the eye and through a process of neuro transmissions along the visual pathway to the visual cortex where our “super computer” known as our brain incorporates these signals into what we perceive as sight. CBS perhaps is our brain’s way of filling in details we once were able to “see” and when the signal is lost or disturbed, substitutes appear.
These images can be as varied as the person who experiences them. A man in his 50’s found that the images of patterns and swirling lights were distracting and confusing until he recognized this as CBS. He has since begun incorporating these images in his artwork. Once the person realizes that it is not a mental health breakdown, coping with CBS can become easier. Sometimes these visual hallucinations go away on their own over time. They can re-occur when a person is fatigued, over-stressed, or if an infection or illness is present.
“I recently saw flowers on my cabinet, which were quite lovely, but not there,” states a woman. At the time, she had been experiencing an infection elsewhere in her body.
Others have expressed seeing faces, some disembodied and grotesque. Some recall seeing people in their homes who are not there and animals on their furniture or bedding. You can understand why being honest about these images would be frightening, not only for the person experiencing them, but loved ones as well. These experiences of visual hallucinations can lead to unnecessary hospitalizations for psychiatric observation and medication.
“I did spend some time on the psych ward as I did not understand that this was my eye condition causing these images. I thought maybe I was having a mental breakdown,” explained a 40-year-old who was not informed this could be a possible outcome of her sudden vision loss.
The difference when a person has visual hallucinations resulting from vision loss compared to a person who is having a psychotic episode is the person with vision loss recognizes that these images are not real whereas the person who is experiencing a mental crisis believes they are real, and they are accompanied by sound, smell or another sense.
There is no current medical treatment to stop CBS hallucinations; however, several coping strategies have been suggested. The images sometimes disappear if the person looks from left to right repeatedly for 15 to 30 seconds. Sometimes changing the lighting from dark to light or the reverse can make the images disappear. Taking up an activity such as watching TV, listening to music or reading a book can break the episodes of images. It is helpful to be able to explain that CBS is a result of your vision loss and not a mental illness and that you understand the hallucinations are temporary moments.
While an intern at a low-vision rehabilitation clinic, I met a few patients, who would tell me they were seeing something totally different than what was being enlarged on a magnifier. I questioned what they were seeing followed up with assurance that if they looked away or tried a few minutes later, the strange image would disappear. I smile when I think of a woman I worked with one day who had a delightful giggle while using a video magnifier. When I asked her what was so funny, she replied “I see little pigs.” I asked her if she liked little pigs, and she replied “Yes, but I really don’t want them to visit me right now.” We both laughed and the little pigs disappeared. She was comfortable in the realization that she had some control that if she gave it a minute or two the real images would return, and little pigs would play another time.
Please share this description of Charles Bonet Syndrome with your friends, families, and most importantly, your medical professionals as it just may save another person from anxiety and medical complications.
For more information on Charles Bonet Syndrome and additional stories of those experiencing CBS, please visit the Royal National Institute for the Blind: tinyurl.com/rnib-cbs or visit
tinyurl.com/moran-cbs to hear an interview with a social worker from the University of Utah Moran Eye Clinic.
I truly appreciate the brave volunteers who shared their experiences with me so that together we can educate and help others who are experiencing vision loss.