Article written by Jackie Hunt Christensen.
There will come a time when you will want to let others know about your diagnosis. Deciding when and how to break the news to your spouse, children, friends and neighbors can be a source of immense stress and worry. While it is impossible to make these conversations pain-free, an important thing to remember is that timing and preparation can help minimize the impact on everyone involved.
To start, you probably do not want to discuss all the details of your illness, but giving those closest to you accurate information about your Parkinson’s diagnosis and how you are handling it is essential. This way they are prepared for what could happen down the road and how it will affect them. Think of these interactions as the beginning of a conversation that will hopefully continue as you learn to cope with your illness.
What you should say and when you should say it
For many people, deciding who and when to tell about a Parkinson’s diagnosis is a source of anxiety and fear. Fortunately, the decision to tell others is yours alone, especially when you are newly diagnosed. But as time passes and your symptoms become more pronounced—worsened by stress or disease progression — it is important to let those you see on a regular basis know about your diagnosis and how it will affect them. Young children almost always know more than we think they do. And friends and family members, too, may observe symptoms such as gait issues and slurred speech, and arrive at their own conclusion.
Before having these conversations, however, you will want to take some time to prepare. Actively thinking about how much information you care to disclose before seeing your grandchildren for the first time since your diagnosis or before your next family reunion will help you anticipate potential questions and give you more control over these stressful situations.
Telling your spouse
Since a person generally spends quite a bit of time (or has previously) with his or her spouse or boyfriend/girlfriend, this person probably has an idea that something is going on with you. Many people with PD report that their spouse was with them at the appointment at which they were diagnosed. But for those whose loved one was not in attendance, most tell them within a week. There are a few people who waited a year or more to tell their life partner of their disease.
Regardless of when they are told, a wide range of reactions by loved ones has been reported. These include everything from expressing fear, concern, relief or support; to leaving the room because they were not emotionally prepared to deal with the information; to questioning the diagnosis. No matter the initial reaction, it is important that you and your partner learn all you can about Parkinson’s disease together. Here is how:
Ask questions together. Certainly, your partner will have many questions, just as you do. Some can be answered by talking with your doctor together or reading books and visiting websites.
Keep talking. It is normal for your partner to wonder how your diagnosis will affect him or her. Some questions such as, “Will Parkinson’s affect our retirement plan?” or, “How will this affect our future?” only can be answered by frank and ongoing discussions between the two of you.
Give it some time. Give your partner some time — for example, a week or a month — to get used to the news before discussing major life changes.
Telling your children
Here are ways to talk to your children about your diagnosis.
Children ages 3 to 6. Keep the conversation short and simple. This way your child gets the message in words that she can understand but you are not overwhelming her with too much information.
Children ages 6 to 11. Keeping things pretty simple — by giving them little pieces of information — is still a good idea.
Children ages 12 to 18. Tell them about your diagnosis in a calm, clear manner, but tailor your explanation to their maturity level. Here are some tips.
- Talk on a level they understand.
- Do not blindside them.
- Tell them sooner rather than later.
- Be prepared to hear questions about how your disease will affect them.
Here are a few points that are critical to mention to all children under 18:
- Your Parkinson’s disease is not their fault.
- Parkinson’s disease is not contagious.
- Parkinson’s disease is not fatal.
Adult children. Not surprisingly, your adult children may be the most difficult of all to tell, because they will probably worry about who will care for you and how. Here is how to break the news.
- Choose a time when nothing else scheduled. Simply tell them about your diagnosis, symptoms, and medications.
- Keep the conversation positive. Let them know that a Parkinson’s diagnosis is not a death sentence.
- Invite them to talk about their feeling and concerns. Then give them time to make sense of it all.
Single and Living with PD
Living alone when you have Parkinson’s disease can be very difficult and lonely. Searching for someone with whom to share your life with PD can be even more difficult and lonely. If you have a close friend, co-worker or therapist who is willing to do some role-playing with you, it can help you to identify how and when to tell a date or potential mate/partner.