Let's Talk About Parkinson's: Starting the Conversation with Others
Following a diagnosis of Parkinson’s disease (PD), many people want to know, “How do I tell others about my PD?” After processing your new diagnosis, you may want to tell family, friends, and colleagues about your condition. Even years after your initial diagnosis, you may meet new people and wonder how and when to tell them.
Discussing your diagnosis is a personal decision - how and when you share medical information is up to you. Check-out some of the ideas below for talking to people about your PD, but remember to always do what feels comfortable to you!
Preparing to talk about your diagnosis
Before talking to other people about your Parkinson’s diagnosis, you may want to take some time to learn more about Parkinson’s disease on your own. When sharing your diagnosis with new people, they will probably have questions and want to know how they can help.
By taking the time to process your diagnosis, learn more about PD, and think about how you want to explain your condition, you will be better prepared for these conversations. Initially, consider telling just one or two close friends or family members- they can help you develop a personal strategy for talking with others.
What about my spouse or partner?
Although it is important to rely on your friends and family for support, for many people with PD, the support of a spouse or partner is the most critical. You and your partner are a team, and you should ask them to be as involved as you want them to be.
Soon after your diagnosis, invite your partner to medical appointments or health education classes, giving them an opportunity to ask questions and learn ways that they can support you.
Rely on your partner, and focus on communicating clearly and effectively about each person’s concerns and needs. Going forward, your partner or spouse will be one of your main sources of guidance and support. They can help you talk to other people about your condition as well.
How do I tell my family and friends?
After learning more about PD and determining how you want to discuss it with others, ask your partner or support person to help you share your diagnosis with other people. Always specify how and if you want the information shared.
For example, if you do not want your entire office to know about your diagnosis, ask your work friends to keep the information private. Depending on the situation, you may want to tell an entire group of people about your diagnosis, or you may want to talk to people one at a time.
Just as your own adjustment and processing took some time, your family members and close friends may also need some time to process the information. Give them time to ask questions, and be sure to express your hopes and plans for the future. Talk to family members and friends about what things will change as your progresses, but also explain what things won’t have to change.
Although it is a progressive disease, you may be able to keep up with many of your normal habits and routines. For example, if you and your sister have lunch every Tuesday, keep those plans, and spend some time discussing Parkinson's together. Keeping up with your personal and social routines can help you to cope with your condition.
Asking for help
In disclosing your diagnosis to friends and family, you will inevitably be asked “How can I help?” To rely on your friends and family members for support, provide them with practical suggestions for ways they can help, depending on your individual needs.
However, if your friends or family members try to do things that you want to do by yourself, politely say “Thank you, but I can do that myself”. Although there may be opportunities for family and friends to support you, you should also set clear guidelines to maintain your independence and self-efficacy, when possible.
In discussing with others, people will respond to your attitude and outlook. If you seem positive and hopeful, they will often react in the same way. Talking about your diagnosis will likely be an ongoing conversation, and keeping your attitude positive may help you to continue this discussion with friends and family. Remember, your needs and symptoms will change over time, so you may find that continuing to discuss with your friends and family will help you better manage your condition.
Talking to my kids about Parkinson's
Most parents will tell you that a child can sense if something is wrong. Even young children are very aware of their parent’s emotions and attitudes. You may want to talk to your kids soon after your diagnosis or whenever your symptoms become more visible.
When talking to your kids, try to be reassuring, and maintain a positive outlook. Discuss what changes or symptoms they may notice, but also tell them what does not have to change. Start by telling them that Parkinson's will not change how much you love them, and talk to them about all the things you can still do together.
Especially for younger children, explain that Parkinson’s is not contagious (they might believe that ‘disease’ means contagious or infection), and consider renting or purchasing books for talking to kids about Parkinson's.
For teenage children, you may be able to share more information about symptoms and progression but focus on talking about the things they can do to help you. By getting your family involved in PD advocacy, awareness, and fundraising events, you can help your kids to understand and keep the whole family positive and hopeful.
Who should know about my diagnosis?
Talking to or telling people about your PD is ALWAYS your choice. Beyond your close family and friends, you may or may not want to discuss your diagnosis, and that’s okay. However, if you do want to tell people, be in control of when, where, and how you tell them.
If you’re in charge of the conversation, you will feel more comfortable. For example, if your neighbor asks how you've been feeling lately, you may ask them in for coffee, rather than discussing it at the kids’ bus stop. Over time, talking to people about your Parkinson's will get easier, and you will learn what strategies work best for you.
Dealing with questions or comments
When discussing your diagnosis, you will inevitably get some pretty annoying comments, suggestions, or questions. Even if your colleague’s “sister’s friend’s dad has Parkinson’s”- YOU are the expert. Always remind people that Parkinson's affects everyone differently, and then tell them how it affects you. You may receive unsolicited medical advice, personal questions, and blatant misinformation. Remember, you control how and when you talk about your condition.
If Parkinson’s affects your ability to communicate (such as trouble speaking or facial masking), it may be helpful to disclose your condition to help people understand your ways of communicating. Explain what will help you and what won’t, and only share or discuss what you are comfortable with.
Should I tell my boss?
Every person has a different way of talking to their boss or colleagues about their diagnosis. While some feel that medical information should be kept private, other people may want to disclose their diagnosis or may have to because of their symptoms or work responsibilities. Generally speaking, you may want to tell your employer about your diagnosis early enough to receive necessary accommodations. If you notice that you now need certain workplace accommodations to continue to do your job, this is probably a good time to tell your boss.
While employers typically appreciate early disclosure of medical conditions, some people with Parkinson's choose to keep their medical status private until otherwise necessary. Under the American Disability Act, you may be protected from workplace discrimination for a disability if you have requested “a reasonable accommodation”.
During the early stages of the condition, you may not require accommodations and therefore may not want or need to disclose this information. Regardless of when you decide to tell your employer, we recommend that you establish an ongoing conversation. Your symptoms and needs will continue to change over time, so establishing an open, honest dialogue may benefit you, and your employer, in the long run.
Keep an open dialogue
The people in your life can be a powerful source of love and support when managing Parkinson’s. Regardless of when you tell someone about your PD diagnosis, we encourage you to keep the conversation going. A Parkinson’s diagnosis does not have to dominate your whole life. As you move forward, keep the conversation open, and rely on your friends, family, and colleagues to discuss your experiences. Lastly, reach out to your Parkinson’s Community, and when you want to, find ways to discuss your experiences with your PD peers!
Do you find music to be an important factor in your life with PD?