How do I tell people that I have Parkinson’s?

Even if you’re an upfront type of person, it can be daunting to explain Parkinson’s to people you meet in everyday situations.

You may be naturally open and find it quite easy to talk about Parkinson’s when you need to. Or you may be more private, or find it hard to come up with the right words. You may never want to tell people you have the condition.

Being prepared and thinking about what you want to say will make it easier each time you want to talk to someone about your condition. For many people, telling others gets easier with practice.

Getting support

You may find it easier to talk about your feelings and experiences with those closest to you first.

If you decide to tell a friend or loved one for example, they may be able to support you when you’re telling someone else about your diagnosis.

Explaining Parkinson’s

Whoever you’re talking with may have their own ideas about what Parkinson’s is. It may be helpful to explain that the symptoms and how quickly the condition develops are different for each person.

You’ll become the expert on your condition, so talk about how it affects you.

Try to anticipate what the person you’re talking to will want to know. This may include questions like:

• What causes it?
• What are the symptoms?
• What effect does it have on you?
• Is there anything I/we can do to help?

Other people’s reactions

You may be unsure about how other people will respond when you tell them you have Parkinson’s. Some people may get very upset, or feel guilty they didn’t notice your symptoms earlier.

They may worry what having Parkinson’s means for the future. If you’re in control of the conversation, you’ll be in a better position to manage other people’s reactions. To do this, choose when to tell people and decide what you want to say.

Different situations

You may want to consider where or who you’re telling, and how it might change your approach.

For example, if you’re joining a new group or class and want everyone to know you have Parkinson’s, talk to the person running it beforehand. Perhaps they could do it for you.

If you’re telling friends, you can ask them not to tell others, or you may be happy for them to pass the information on.

Let people know whether you’re happy for them to talk to you about Parkinson’s. You may not wish for it to become a topic of conversation in your day-to-day life with them.

Work

In most cases you don’t have to tell your employer if you have Parkinson’s. But you may feel it’s helpful - your employer has a legal duty to make reasonable adjustments, such as adapting your work space or changing working patterns.

You must tell your employer if there are health and safety issues relating to parts of your work.