People with Parkinson’s ‘forced to hide their condition’

man looking to the right

New research conducted on behalf of Parkinson’s UK has revealed that around a third of people who have Parkinson’s disease have felt the need to hide their symptoms or even lie about having the condition, often due to fear of social stigma and of embarrassing friends or family.

There are 127,000 people in the UK living with Parkinson’s – around one in 500 people. The primary symptoms affect movement and include tremor or shaking, slowed movements and rigidity or muscular stiffness, and usually present alongside a range of other physical and cognitive symptoms.

The research was carried out ahead of Parkinson’s Awareness Week (April 18 – 24), and found an estimated 42,000 people with Parkinson’s delayed sharing their diagnosis with people close to them. Reasons cited for this delay include:

  • They didn’t want people to feel ‘embarrassed’ or ‘awkward’ around them
  • They were worried that they might be judged by others
  • They felt their symptoms would not be ‘socially acceptable’

Parkinson’s UK also says that many people expressed a “worrying level of emotional repercussions” following their diagnosis, which seemingly impacts on younger people the hardest. Some newly-diagnosed people reported feeling “like their world had ended”, “like they were grieving” and some said they felt unsure of who to turn to following their diagnosis.

During Parkinson’s Awareness Week, the charity hopes to increase awareness of the condition and its work to support those living with Parkinson’s.

man with his head in his hand

“Devastating impact” on emotional health

Steve Ford, Chief Executive at Parkinson's UK says: "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.”

Help and support is available

Steve Ford adds: "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."

What are the symptoms of Parkinson’s?

According to Parkinson’s UK, Parkinson’s is a complex condition that can affect people in varying ways. While the main symptoms are shaking, slowed movement and stiff muscles, other symptoms may include fatigue, eye, skin, bladder and bowel problems, pain, dizziness and problems with speech, communication and swallowing. Many people with Parkinson’s also develop anxiety, depression, memory problems and dementia.

Symptoms and disease progression can vary from person to person, but medication and other treatments are available to help sufferers manage many of the symptoms - evidence shows that the right support can make a huge difference to quality of life.

To find out more about Parkinson’s symptoms and to access advice, help and support, click here.


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About the author

Georgie Fenn, writes most of our news articles and social media posts.