One of the most critical components of any strong relationship is ongoing, open dialogue. Whether it's your spouse or partner, your children or friends, your medical providers, or others you are close to, communication is essential to living well with Parkinson's.
When should you share your diagnosis is a very personal decision, and it depends on many different factors. Before talking openly about the diagnosis, some people may worry about:
The added stress on their children
Not being able to explain the many unknowns about Parkinson's
Being treated differently by family, friends, and peers
Receiving too much attention due to the Parkinson's diagnosis
Losing a job or friendships
Being misunderstood or left out
How talking about the diagnosis makes it seem more real
How it will impact career, benefits, etc.
If you feel these concerns, ask your physician to refer you to a social worker or another professional and you can discuss your concerns or worries. You may feel less anxiety if you learn how to begin talking about Parkinson's with your family and friends without fully revealing your diagnosis. Understanding more about the early stages of Parkinson's can also ease the process of telling others about your diagnosis. The more you know, the easier it will be to talk with others and alleviate their fears on your behalf.
Plan what you want to share and what you wish to keep private. Going into these conversations with a clear intention will give you control, which can help put you and the person you're talking to at ease. Plan, too, whether this communication will be in person, by phone, or via writing.
You can also prepare by thinking beforehand about people's questions and the answers you'll give. For example, people may have misconceptions about PD. They may think it's fatal, that it just causes people to shake, or that it's only an "older person's disease." You might want to prepare to respond to those myths with facts to avoid an overly emotional discussion that leaves you exhausted.
The people who care about you will want to know how they can help, and as a result, they may ask a long list of questions to show concern for you. Again, you might think in advance about the answers you want to give to questions such as, "How can I help?" or "What will this mean for you in the long run?" Stay calm, be honest and forthright, but if the conversation grows overwhelming, gently tell them, and suggest you talk about it more at another time.
Finally, give yourself and others time to process. Although people may have noticed differences in you and reached their conclusions, your diagnosis may still be a shock to them. Make sure to allocate enough time for them to digest what is happening.
Communication is the cornerstone of every healthy relationship. This is especially true when someone in the relationship is living with a chronic condition like Parkinson's.
Telling Your Spouse
Many people receive their Parkinson's diagnosis with their partner sitting next to them; however, for those whose partner isn't there, it's important to tell them in a timely manner so that you can plan to move forward together. Even if you want to protect them or you're worried about how things might change, being open with them is critical. You and your partner can grow to understand Parkinson's by asking questions and seeking information together. Your partner or significant other may also have pertinent questions that you haven't thought of or offer a different perspective that can help you see your diagnosis in a new way.
Your partner can also become a resource and an advocate for you. Once you have told them, they can help facilitate further disclosures of your diagnosis. For example, it may be particularly challenging to tell your children, but telling them together can make it easier. They may also help you practice for future conversations and determine what you do and don't want to share with specific people.
Telling Your Kids
One common Parkinson's challenge for people with children is deciding when and how to share the news of your diagnosis. The way you share your diagnosis with your children will vary based on their age and maturity level. No one knows your children better than you do; so, you probably know what they can and can't handle. With children of all ages, take time to check in with them about what they're thinking and feeling. Giving them opportunities to put their concerns into words can help them make sense of their feelings and allow for a more open and honest dialogue.
Children Seven and Younger
Begin by mentioning symptoms they may have already noticed. You might ask, "Have you noticed that my hand is sometimes shaky or that I've been walking slower? We talked to the physician, and it turns out that I have something called Parkinson's."
Give them the basic facts. Let them share what they have noticed, talk about things that might change, and stress that medication and other treatments will help you feel better. Be clear and consistent in what you say, and don't let the conversation go on too long. Remember, children pick up on a lot and will often mirror your demeanor. Maintain a positive attitude and make sure they know it's okay for them to go on as before.
Children Ages Eight - Fourteen (Approximately)
Explain the diagnosis in a simple, factual way and don't overburden them with excessive scientific terms or non-motor symptoms like hallucinations that might seem scary. If you sense they are worried that they somehow contributed to your Parkinson's, reassure them that it is not their fault and that you're still the same person.
Be prepared for questions but try to keep the conversation brief and positive overall. Retaining as much normalcy as possible and giving them a sense of control will help them process your diagnosis. Be ready for them to ask questions, either in the moment or later, especially if they decide to research Parkinson's on their own. If they do, be sure to stress the importance of seeking out reliable sources and how to do that.
Teenagers and Adult Children
After learning about your diagnosis, older children will often focus on what they can do. Depending on where you are in the process, you can either assure them that nothing much is changing or suggest some specific actions they can take to help. For example, you may suggest they can help by cooking dinner once a week or by holding you accountable for completing an exercise goal every day. Leave the dialogue open and communicate with them as your health changes or you experience new symptoms, so they know you want them to be in the loop.
If you have grandchildren, you can follow the guidelines we shared above to tell them about your diagnosis, or you might choose to rely on your children to help guide the conversation. Either way, it's important to have a clear understanding with your own children as to how much your grandchildren can and should be told about Parkinson's. They will know better than you do how much their children can process and understand, so be sure to communicate with them before sharing the diagnosis with your grandchildren.
Telling Your Parents
Telling your parents about your diagnosis may be difficult, especially if you're caring for them in some way and don't want to burden them. Some parents have reactions of guilt at not having protected their children from something like Parkinson's. Encourage them to focus on what you need now. Try to keep your routines consistent and be honest about where you are on the journey with Parkinson's. Even if you're helping them, you can still be open and honest about your own experience.
Telling Your Friends
After a Parkinson's diagnosis, many people wonder when to tell their friends and how it might change those relationships. While some people may feel tempted to retreat and keep to themselves rather than confiding in friends, social isolation is not the answer. While it's important to give yourself time before telling your friends that Parkinson's is now one part of your life, remember and remind them that it is just one part. Keep taking part in the activities and get-togethers you enjoyed before diagnosis. Be patient when friends ask questions and designate "Parkinson's-free zones" if doing so helps you feel more comfortable when with friends.
Remember, too, that you are now part of a community of other people who truly get you. Many people in our community say that the new friendships they've made with others living with PD are the silver lining of the diagnosis. In Parkinson's support groups, exercise classes, conferences, and other social gatherings, you can find a group of people who understand what you're experiencing and who will be there to support you every step of the way.
As they learn more about Parkinson's, children and friends of all ages often feel inspired to get involved with advocacy, fundraising, and events. Numerous people in our community have told us that their family members love to hold bake sales for Parkinson's, fundraise through cycling events or other activities, and connect with other care partners and people living with Parkinson's in person and through online events. Invite your family and friends to participate in whatever activities call to them.
Sources: Davis Phinney Foundation for Parkinson's. Social Connections, Relationships and Community. Chapter 13. Pages 221-225. Every Victory Counts, Your Go-To Resource of Essential Information, and Inspiration for Living Well with Parkinson's. "Manual." Sixth edition, 2021.