Nearly two fifths of people with Parkinson’s have felt the need to hide their symptoms or lie about having the condition. This is according to new research, conducted by ComRes on behalf of Parkinson’s UK to mark Parkinson’s Awareness Week 2016.
The survey asked people with Parkinson’s about their experiences of sharing their diagnosis and condition with their friends, family or colleagues. It found that an estimated 42,000 people in the UK delayed sharing their diagnosis with someone who was close to them.
Reasons included that they didn’t want people to feel awkward or embarrassed around them; they were worried they may be judged and they felt like their symptoms were not socially acceptable.
Many of the people surveyed also expressed a worrying level of emotional repercussions. Some experienced negative emotions in the year after their diagnosis. The news had the hardest emotional impact on younger people with Parkinson’s. Others reported feeling ‘like their world had ended’, ‘like they were grieving’ or ‘like they didn’t know who to turn to’.
Steve Ford, Chief Executive at Parkinson’s UK said: “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.”