New research from Parkinson’s UK shows that 38% of people with Parkinson’s feel the need to hide their symptoms or lie about their condition. The health charity has released the research to mark the start of Parkinson’s Awareness Week.
It has been revealed that people living with the condition have “an alarming level” of fear around sharing their diagnosis, which then leaves them cut off from vital support and struggling to cope.
“No-one should feel alone in dealing with a diagnosis of Parkinson’s,” Said Steve Ford, Chief Executive at Parkinson’s UK, “too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.”
The research reports that those who did feel the need to hide their symptoms did so because of; awkwardness and embarrassment (63%), feeling judged (34%), and like their symptoms were socially unacceptable (32%). The main reasons cited by those who delayed telling family and friends said it was because they didn’t know how to bring it up or want to accept their diagnosis.
“I didn’t expect to be told I had Parkinson’s at 40. At the time, I wanted to be able to live as Sarah without Parkinson’s for as long as I could, rather than Sarah with Parkinson’s.” admits Sarah Webb, who was diagnosed with Parkinson’s in 2010 at the age of 40, but delayed telling anyone except her close friends and family for 2 years.
For advice, information and support, visit www.parkinsons.org.uk or call 0808 800 0303.
Photo credit: Jeronimo Sanz, Eu Sou