Talking to people about Parkinson's
If you've been diagnosed with Parkinson's, you may be thinking about the best way to talk with others about your condition, whether it's those closest to you or people you've just met.
Telling friends and family
Having that first conversation with family and friends about your Parkinson's can be difficult, but you may find it helps you feel better about living with the condition.
Watch our video to hear about people's experiences of talking openly about life with Parkinson's.
Why should I tell people about Parkinson's?
It's up to you to decide whether to tell people you meet that you have Parkinson's. You may not want to tell people you have the condition.
If you've just been diagnosed, you may need some time to absorb the information yourself before you talk to others.
But choosing not to tell other people may make you feel isolated.
You may find that opening up to people can be a positive thing and can widen your support network.
Not everyone needs to know, and not everyone needs to know straight away, so wait until you're comfortable.
Once you've decided to tell someone about Parkinson's, try to choose a moment when you both have time.
While family celebrations may be a good time to talk to a number of people at once, it may not be the best place to talk to people for the first time about Parkinson's.
Sometimes you may not be sure if you should mention your condition to people. But if you've spent more than 5 or 10 minutes feeling uncomfortable about whether to say anything about Parkinson's, and the thought is very distracting, it may be time to say something.
Try to prepare
You may be someone who is naturally open and finds 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.
Even if you are an upfront type of person, it may be daunting to explain Parkinson's to people you meet in everyday situations.
Thinking about these issues and being prepared will make it easier each time you want to talk to someone about your condition.
How do I tell people I have Parkinson’s?
Talking about Parkinson's will get easier with practice. Once you've told a few people you're likely to feel more confident.
You may find it easier to talk about your feelings and experiences with those closest to you first.
Being prepared can help you to be more positive when you're talking with others, which is more likely to result in a supportive response.
You may also find it useful to think in advance of a good way to start the conversation.
Whoever you're talking with may have their own ideas about what Parkinson's is and who it affects.
When talking about your diagnosis, it may be helpful to explain your own symptoms.
You may find it useful to imagine you are meeting an old friend you haven't seen for 10 years. What are the things they will notice about you? This can help you explain the visible ways that Parkinson’s affects you.
How will people react?
You may be unsure about how other people will respond when you tell them you have Parkinson's.
There can be lots of different reactions. A person may get very upset or angry, or feel guilty they didn’t notice your symptoms earlier.
They may worry that Parkinson's is a life-threatening condition and what that means for the future.
If you're in control of the conversation and try to approach it with a positive attitude, you'll be in a better position to manage other people's reactions. To do this:
- choose when to tell people
- decide what you want to say
- try to anticipate what they'll want to know. This may include questions such as "Is it hereditary?", "What causes it?", "What effect does it have on you?", "Is there anything I/we can do to help?" or "Can you still work?" You can find answers to all of these questions in our Information and Support section.
Talk it over with someone you're close to first, so you're prepared. They may be able to help you talk to others.
Try to stay in control of when, where and how you want to tell people. But be prepared for the possibility of an unavoidable situation where you need to tell someone.
Whether it's you or someone else talking about Parkinson's on your behalf, be very clear about what you do and don't want other people to do.
Say what they need to be aware of and how they should treat you.
You may choose to take a friend or relative with you for support when you're telling someone about your diagnosis. Be clear about their role beforehand to avoid them talking over you or on your behalf.
Remember you are the expert on how Parkinson's affects you.
If you're worried about telling people, you can speak to our helpline on 0808 800 0303.
Telling your friends
If you have a group of friends, you may want to tell them together or one at a time. You may ask people not to tell others, or you may be happy for them to pass the information on.
Let your friends know how you want to share the information with others, and whether you're happy for them to talk to you about Parkinson's directly.
Even if you don't want this at first, as time passes and your needs change, you may want to raise the subject again.
This will be easier if you've occasionally mentioned your Parkinson's in conversation, showing your friends that it's OK to talk about it too.
If you're joining a new group or class and want everyone to be aware that you have Parkinson's but want to manage their reactions, talk to the leader beforehand. Decide between you how to inform the group.
You may want the leader to do it, or perhaps want to explain yourself. You may prefer to talk to people individually.
Talking about Parkinson's to people you meet can be one of the challenges of living with the condition.
Finding ways to do this that work for you will ensure it doesn't become a barrier between you and what you want to do.
Should I tell my work?
You may be wondering what you should do about work. Find out more about working and Parkinson's and your rights around what you need to tell your employer.
What about the DVLA?
You will also need to inform your insurance company.
What about travelling abroad?
Our helpline has received calls from people who have had to explain their symptoms or medication as they've passed through airport security.
In these situations, it can make all the difference to have a frank explanation ready to hand.
Our Parkinson's medication card allows you to write down all the medications you take and contact details for healthcare professionals.
And our credit-card sized Parkinson's alert card is something to show people when you want them to know you have Parkinson's, but don’t want to have to explain yourself.
You can carry it in case of emergencies or when you're having movement or communication problems. You can order both cards directly from us.
Helpline and local advisers
If you need more support to talk to people about Parkinson's, our helpline and Parkinson's local advisers are here to help.
Call us on 0808 800 0303.
Last updated May 2014. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected].