In the second part of the online survey conducted late last year, its focus was on what was happening in people’s internal world and how they felt the syndrome was affecting them.
- In terms of people’s initial reaction when their unusual visual experiences first began, the top 3 responses were: Confused (51%), Startled (48%) and Scared (44%). When this was compared to people’s current reaction to living with the syndrome, these top 3 emotional reactions (ie. confused, startled and scared) had all fallen to below 15%. This is in line with past research which shows that many people’s initial fears (eg. losing one’s mind) tend to reduce as they learn more about the syndrome.
- The top 3 emotional reactions to people’s current lived experience of CBS were: Concerned (48%), Frustrated (41%) & Anxious (38%). It seems that even if their greatest fear of losing one’s mind has been eased, their symptoms continue to affect their emotions.
- Interestingly, 19% found their initial unusual visual experiences to be Pleasant; a similar result was reported for their current experience (15%). This points to perhaps 1 in 7 people living with CBS find their experiences to be positive or enjoyable.
To the question, "When your (or a love one's) unusual visual experiences first began, which of the following describes what you were initially thinking / feeling?"
- I had no idea what was happening to me. (51%)
- I wondered if I was losing my mind. (44%)
- I was scared and wanted it to go away. (44%)
- I was curious and wanted to understand it better. (30%)
- A health care professional had already forewarned me of the possibility of the syndrome (so I thought it could be CBS). (0%)
For the question, “What aspect of CBS is most important to you (or your loved one)?”, the top 3 responses were:
- Doctors and health care professionals being more aware of CBS. (70%)
- Receiving factual information about the syndrome with helpful resources. (56%)
- Being linked to a group of people also experiencing the syndrome. (48%)
“Has your (or your loved one's) CBS had a negative effect on any of the following?”
- Sleeping (55%)
- TV watching (51%)
- Mood/outlook to life (48%)
- Balance/risk of falls (44%)
- Leaving home (44%)
- It’s worth mentioning too that 11% stated their CBS had no negative effect on any aspect of their life. This is in keeping with a significant minority who stated that their CBS was a pleasant experience.
Summary
Most people living with CBS are stating that they want and need the medical and health care sector to be far more responsive to the syndrome.
Even though there's reassurance that CBS is not linked to losing one's mind, this survey indicates that many people living with the syndrome are still facing significant emotional and functional difficulties in everyday life. The true extent of the toll that CBS is taking on many people’s lives (and their carers) continues to be largely unnoticed.
