TWO-fifths (42%) of people with Parkinson’s in Eastern England 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.
Nationally, 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 with an estimated 12,000 affected in Eastern England. Someone is diagnosed with the condition every hour1, and the charity estimates that 42,000 people in the UK have delayed sharing their diagnosis with someone close to them. 2
Across the UK, 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 findings come as nearly a third of people (32%) in Eastern England who have told friends, family or colleagues about having Parkinson’s 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. A third (33%) of those surveyed in the East of England 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’ (14%), ‘like they were grieving’ (16%) or ‘like they didn’t know who to turn to’ (7%).
Ryan Cameron, 33, a PE teacher, from Bushmead in Luton, Bedfordshire, said;
"When I was diagnosed with Parkinson’s, I fell apart. I can remember the day I was diagnosed like it was yesterday. I remember going outside, phoning my mum and breaking down.
"After I was diagnosed, I got myself together for a few months. However, six months later I became depressed. I was anxious about my future, and it took me a full year to come to terms with Parkinson’s.
"I didn’t tell all of my work colleagues until four months after my diagnosis, where I informed my manager and other staff who needed to know. I wanted people to empathise that there were some tasks I found difficult to do at times.
"The day after my diagnosis, I got in touch with Parkinson’s UK, and got information leaflets. I went to a local support group the following Wednesday, and everyone was shocked that I was so young. I’ve been going every month since.
"In many ways, telling people I have Parkinson’s felt like coming out. It was a release to tell people at work. It was good not to feel I was hiding it. It was good to be honest about it."
Positively, people who have shared their diagnosis with their immediate family in the East of England reported feeling ‘able to accept they had Parkinson’s’ (42%), while nearly a quarter (23) reported feeling relieved, and that they felt glad they didn’t have to hide their symptoms anymore (13%).
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."
