Parkinson's Awareness Week 2016
Nearly two fifths of people with Parkinson’s (37%)1 have felt the need to hide their symptoms or lie about having the condition - according to new findings released 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 (63%), feeling they would be judged (34%), or not feeling like the symptoms were socially acceptable (32%).
There are 127,000 people with Parkinson’s with the UK, and 3,600 people in Northern Ireland, with someone being diagnosed with the condition in the UK every hour.1 The charity estimates that 42,000 people in the UK have delayed sharing their diagnosis with someone close to them. 2
Those who delayed telling family or friends (33%) said it was because of:
- Not knowing how to bring it up (36%)
- Not wanting to accept their diagnosis (33%)
- Being unable to find the words (28%)
- Thinking they would be stigmatised (21%) or look weak (19%).
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 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’ (18%), ‘like they were grieving’ (14%) or ‘like they didn’t know who to turn to’ (13%).
Jack Glenn, 73, from Londonderry was diagnosed 10 years ago.
“When I was diagnosed I felt in shock. I was angry and depressed but I knew I wanted to tell my family immediately.
“I felt it had to be said, there was no point in prolonging the news and I didn’t want to make a secret of it,” explained Jack.
When asked if he told his extended family and friends, Jack said: “Yes, I didn’t want the wrong information getting out and I wanted people to know from me that I had received this diagnosis.”
When asked if he had ever tried to hide or lie about his symptoms he said: “I have never lied about my symptoms but when I was first diagnosed I did try to hide my symptoms. To be honest it was about my self-esteem and I didn’t want people to see me with a tremor, I didn’t want them to think I wasn’t one hundred per cent well.
“That doesn’t bother me at all now.”
People who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’ (45%), while one in four reported feeling relieved (27%), and 15% say they felt glad they didn’t have to hide their symptoms anymore.
Nicola Moore, Northern Ireland Country Director 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.”