People with Parkinson’s forced to hide or lie about their condition

Guest Blog by Steve Ford, Chief Executive, Parkinson’s UK

New research, released by Parkinson’s UK to mark Parkinson’s Awareness Week (18th – 24th April), shows that nearly two fifths (37%) (1) of people living with the condition have felt the need to hide their symptoms or lie about it – cutting people off from vital support at a time when they’re trying to deal with a life changing diagnosis.

127,000 people are living with Parkinson’s in the UK, with one person being diagnosed with the condition every hour. (2)The charity estimates that 42,000 people are delaying sharing this diagnosis with someone close to them. (3)

Those who delayed telling family or friends 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, with over a third of those surveyed experienced negative emotions in the year following their diagnosis.

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%).

For David Plummer, wildlife photographer, from West Sussex, after six months of on-going tests, being diagnosed with the condition caused him panic, claustrophobia, and difficulty sleeping. And it’s still something he doesn’t like to talk about –often trying to hide it if symptoms are showing.

Positively, nearly half of people who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’, while one in four reported feeling relieved (27%), and 15% say they felt glad they didn’t have to hide their symptoms anymore.

As the UK’s leading charity, supporting those with the condition, Parkinson’s UK is determined to that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations. Offering advice, information and support to anyone affected by Parkinson’s, through their website www.parkinsons.org.uk or calling their confidential helpline on 0808 800 0303.

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1. Based on a prevalence of 127,000 people living with Parkinson’s in the UK, this equates to 46,990 people
2. Parkinson’s UK (2009) Parkinson’s prevalence in the United Kingdom
3. Estimated from a figure of 33% of those surveyed and based on a prevalence of 127,000 people living with Parkinson’s in the UK.