Almost two-fifths of people in the UK with Parkinson’s disease have felt the need to hide their symptoms or lie about having the condition, a survey has shown.
The findings, from the charity Parkinson’s UK, are said to reveal an “alarming” level of fear surrounding the disorder.
A total of 127,000 people in the UK live with Parkinson’s, a progressive brain disease that causes uncontrollable tremors, slow movement, and impaired speech.
Parkinson’s UK estimates that 42,000 affected people in the UK have delayed sharing their diagnosis with someone close to them.
A total of 1868 Parkinson’s sufferers were questioned for the survey between January 14 and February 11.
More than a third of those polled said they had experienced negative emotions during the year following their diagnosis.
According to 18 per cent of this group it was as if “the world had ended”.
A total of 37 per cent had felt it necessary to hide their symptoms. Of those, 63 per cent wanted to avoid people feeling awkward or embarrassed around them.
Nearly a third of this group (32 per cent) did not feel that the symptoms were socially acceptable.
For many patients, breaking the news about their condition to friends, family members or colleagues felt like “coming out”.
Parkinson’s UK chief executive Steve Ford said: “No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.
Wildlife photographer David Plummer, 47, from Henfield, West Sussex, said after his diagnosis of Parkinson’s he walked round and round a square in London feeling “completely dazed”.
He added: “There are a few people I told quickly but after that I didn’t announce it. I’ll often try to hide it if my symptoms are showing, as sometimes it’s embarrassing. When going out on dates or in social situations it’s not something you want to say first off. A part of me wants to hide it.”