THE BLOG

People With Parkinson's Forced to Hide or Lie About Their Condition

18/04/2016 08:30 | Updated 18 April 2016

Put yourself in the shoes of someone who has just been diagnosed with Parkinson's. You have been told you have an incurable, degenerative condition, which can leave people struggling to walk, talk or sleep. Perhaps the diagnosis was unexpected; perhaps you went to your hospital appointment alone. You are now faced with the difficult decision of how to say the words to the people closest to you, 'I have Parkinson's.'

As part of Parkinson's Awareness Week, Parkinson's UK surveyed people with the condition. Our results revealed an alarming level of fear around sharing a diagnosis of Parkinson's with people close to them.

There are around 127,000 people living with Parkinson's in the UK, with someone being diagnosed with the condition every hour. From our research we estimate that up to 42,000 people in the UK delay sharing their diagnosis. That could mean that 42 000 people aren't accessing the full range of support that they need, at the time when they may need it most. On top of this our research found that nearly two fifths of people with Parkinson's have felt forced to hide their symptoms or lie about having the condition.

As always, behind each of these statistics there is a story. There is Louisa, whose partner refused to tell people she had Parkinson's after she had been diagnosed, leaving her angry and upset. Or Sarah, who didn't tell anyone apart from close friends and family about her diagnosis for two years and whose two sons still do not know she has Parkinson's. Or James, who was living overseas, and who tried to hide his symptoms in order to pretend everything was normal and carry on as if nothing was happening.

The bottom line is that no-one should feel alone in dealing with a diagnosis of Parkinson's. Over a third of people we surveyed experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people. Many people reported feeling 'like their world had ended' 'they were grieving' or 'like they didn't know who to turn to'.

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. I spoke to someone the other day who told me how hard it is to tell other people when you are newly diagnosed and don't know much about the condition yourself. For him, it worked best to share our Quick Introduction to Parkinson's with his employer and his family. But there is no one size fits all approach.

We do 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.

You can find out more about the advice, information and support that Parkinson's can offer to anyone affected by Parkinson's by, visiting www.parkinsons.org.uk or calling our free, confidential helpline on 0808 800 0303.

Parkinson's UK is the UK's leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson's through cutting edge research, information, support and campaigning.

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