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 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.
Patrick Faith, 55, from Ballymena was diagnosed in 2013.
He explained: “I was being treated for a sore back and my wife, who works in the community with others living with Parkinson’s, told my GP that she thought I might have the condition.
“I was sent to the consultant and he confirmed the diagnosis. Even though my wife had suspected I had Parkinson’s it was a shock when it was confirmed and I was very emotional and didn’t want anyone to know.
“I was unable to talk to my extended family for about three months. I eventually did tell my brothers and sisters and it was such a relief. It felt like a weight off my shoulders that I didn’t have to hide anymore.
“I would advise anyone who is delaying telling their family to do it as soon as possible and let them help.
“My wife also knew of a Parkinson’s support group in the area and I joined up.
“It was great to have the chance to talk to other people with the same condition as me, if they offer advice you know what they say would possibly be of benefit or they can point me in the right direction. The support group also hold events that give you important information.”
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.”
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%).