Two-fifths of people with Parkinson’s in the South East (40%) have felt the need to hide their symptoms or lie about having the condition - according to new findings released today by Parkinson’s UK.
The research, released by the charity to mark the start of Parkinson’s Awareness Week, has revealed an alarming level of fear around sharing a diagnosis of Parkinson’s, cutting people off from vital support available at a time when many report struggling emotionally to come to terms with their condition.
Those who did feel the need to hide their symptoms reported not wanting people to feel awkward or embarrassed around them (66%), feeling they would be judged (40%), or not feeling like the symptoms were socially acceptable (34%).
There are 127,000 people with Parkinson’s with the UK with an estimated 5,600 affected in the South-East, with someone being diagnosed with the condition every hour.
The charity estimates that 42,000 people in the UK have delayed sharing their diagnosis with someone close to them.
Those who delayed telling family or friends in the South East (32%) said it was because of:
· Not knowing how to bring it up (30%)
· Not wanting to accept their diagnosis (35%)
· Being unable to find the words (21%)
· Thinking they would be stigmatised (26%) or look weak (21%).
The findings come as almost three in ten people who have told friends, family or colleagues about having Parkinson’s in the South East (28%) felt that telling people for the first time they had the condition was like ‘coming out’.
The charity is concerned by the findings, which reveal a worrying level of emotional repercussions for people diagnosed with Parkinson’s. Over a third (37%) of those surveyed in the South East experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people with Parkinson’s. Many people reported feeling ‘like their world had ended’ (19%), ‘like they were grieving’ (15%) or ‘like they didn’t know who to turn to’ (12%).
Beverley Cook, 67, is from the South-East. She was diagnosed with Parkinson’s in November 2006 but only told immediate friends and family for the first three years.
Beverley said: “It was such a raw feeling that I just couldn’t talk about it, even to other family members, I didn’t want to speak to them when they rang.
“My hand would be very shaky with a tremor so for the three years I was constantly trying to hide that. It always got worse if I was eating or holding a piece of paper, but I felt like people would be watching me and feeling sorry for me if they knew. The stress of trying to hide it seemed to make everything worse. People would ask me if I had a bad back, I didn’t tell them it was Parkinson’s that was causing problems.
“Eventually I realised that word was getting out, I could tell by the way that people were speaking to me that they knew something was wrong, so I told them. And they were so kind, I wondered why I had been hiding it from them for so long.
“If I could change anything, I don’t think I would have kept my diagnosis from my colleagues for so long. I needed a bit of time in the beginning, but not three years. I would advise people to give telling someone a try, you might be nicely surprised at how it helps.”
Positively, people who have shared their diagnosis with their immediate family in the South East reported feeling ‘able to accept they had Parkinson’s’ (42%), while almost three in ten reported feeling relieved (26%), and 17% say they felt glad they didn’t have to hide their symptoms anymore.
Steve Ford, Chief Executive at Parkinson’s UK 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.
“It’s worrying that many people with Parkinson’s, for a wide range of reasons, are not able to access the help they need - and it’s having a devastating impact on their emotional health. We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations.
“We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone. We are here to help people find the support they need, when they need it.”
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