Talking to people about Parkinson’s
The decision to disclose your diagnosis of Parkinson’s is a very personal one. You may find it relatively easy to talk about Parkinson’s, or you may be more private or find it hard to come up with the right words. There can be lots of factors to consider as to whom, when and how you disclose your Parkinson’s.
This section covers:
In general, it’s up to you to decide when you tell people you have Parkinson’s. If you have only been diagnosed recently, you may need some time to adjust before you tell others. On the other hand, you may find it isolating dealing with things on your own, and opening up to people can help you share what you’re going through.
- Try to stay in control of when, where and how you tell people.
- Be prepared for the possibility of an unavoidable situation where you need to tell someone
- It is a good idea to start by talking it over with someone you are close to – they may be able to support you in talking to others about Parkinson’s
- Be selective about when you tell people. For example, family celebrations may be a good opportunity to tell a number of people at once, but may not be the ideal place to talk for the first time about Parkinson’s.
- It is important to give partners, family members and friends space to come to terms with the diagnosis, as they will deal with the experience in their own way. Keep dialogue open and talk with each other about the impact of the diagnosis.
Talking about Parkinson’s gets easier with practice. Be prepared, thinking in advance of a good way to start the conversation, or the kinds of things you will say.
When talking about your diagnosis, it can be beneficial to explain a little about Parkinson’s. Many people know little about the condition, or may have preconceived ideas that might not be accurate.
- Have some Parkinson’s Victoria fact sheets on hand for your family and friends to read through in their own time. These fact sheets are easy-to-understand resources that outline the condition and the symptoms that can be experienced
- Explain that the symptoms can vary for each person with Parkinson’s
- Let your friends and family know how you want to share the information with others. There may be certain people you want to tell personally, while you may be happy for others to pass the news on so that you don’t have to tell everyone yourself
It’s hard to predict how people will react to news of your Parkinson’s, but in the majority of situations the reaction will be supportive.
People will often take cues from you – if you occasionally mention Parkinson’s in conversation, or can refer to it with ease, this will signal to your friends and family that it is ok for them to talk about it too.
Reinforce to family and friends that while you now have a diagnosis of Parkinson’s, you are still the same person – Parkinson’s is simply a part of your life you are adjusting to living with. Let those around you know what you do or don’t want them to do. Often people are eager to offer support, but are not sure how – give them examples of ways they may be able to help you.
You may find yourself in situations where your symptoms are apparent to people you don’t know well. As you become more comfortable with your diagnosis, you might like to tell more people you have Parkinson’s.
People are more likely to be patient if they understand the reason for things. For example if you are having trouble getting money out at the cash register. This has the added benefit of raising awareness of Parkinson’s in the general community.
Generally there is no legal obligation to disclose the diagnosis of Parkinson’s, unless there is an occupational health and safety risk (to yourself or others).
You may have concerns that disclosing your health status will be bad for your career, or mean your co-workers and supervisors perceive you as less capable of doing your job.
However, disclosure may be positive as it may explain visible problems, rather than people making incorrect assumptions. Telling colleagues about your Parkinson’s can also lessen stress levels that arise from attempting to disguise symptoms. You may also be able to make modifications at work to allow you to continue working (without further compromising your health). For example, varying your role, working more flexible hours or modifying your workspace may assist.
If and when you decide to disclose your Parkinson’s, approach the conversation professionally. Provide your manager or co-workers with information about Parkinson’s and present them with solutions rather than problems.
For more information on this topic visit the Working with Parkinson’s section.
Support for you
Call Parkinson’s Victoria’s Health Information Team on 1800 644 189