Talking to Your Loved Ones About Your Disease

You may feel tempted to keep your diagnosis hidden for years, especially if you have not coped with your diagnosis yet. By hiding your disease, you are keeping your loved ones in your pre-diagnosis life.

Speaking with your loved ones engages them in new relationships and connects your prior and post-diagnosis life. This brings together the past that you shared with your loved ones, your present condition and the future plans you have invited them to take part in. By doing this, your story’s main actors are you and your loved ones instead of the disease.

Revealing your diagnosis can prevent social isolation, which is common in Parkinson’s, and be a therapeutic act that helps you better live with the disease.

The first years of treatment are commonly referred to as the “honeymoon phase” because your disease can go unnoticed without too many adjustments on your part. But you cannot pretend to be living in the same conditions as your old life for too long. Take advantage of the fact that you still have enough energy to take this step with your loved ones,

Moving on from pretending to talking openly about your disease is a major accomplishment that allows you to bridge your old life and the one that lies ahead.

The length and extent of the steps involved in coping with the diagnosis vary from person to person. Take a step back from your acceptance process to find out where you stand before you tell those around you. Don’t underestimate your capabilities, nor the future concerns of your loved ones. 

You will soon realize that there is no single perfect way of telling your loved ones about your diagnosis. All of your announcements will be different depending on how you feel that day and the person you are speaking to.

• Determine in which order and when you would like to tell your loved ones about your diagnosis.
• Decide if you want a loved one who already knows to be present with you.
• Choose the tone you wish to use and whether you want to share how you feel about the diagnosis.
• Decide if you want to discuss your current state and needs.
• Determine ahead of time which points you want talk about and which you want to avoid.
• Determine if you want a response from the person you are speaking with and if you would like to know their reaction and how they feel.
• Preserve your energy for each conversation, since communicating and clarifying can become tiring.
• Prepare yourself to repeat your story multiple times, even to the same people. Your announcement can come as an emotional surprise for your loved ones, with a lot of information they are probably not used to.
• Set a given amount of time for each person and don’t force yourself to prolong the conversation if you do not want to. You can always cut the conversation short and continue it at a later time.
• Prepare ready-made answers to the questions that are sure to come up most often.
• Be prepared for offers of help and determine how you want to respond.
• Prepare a concise explanation of a few minutes that sheds light on your disease and its progression for those who seem most distant.
• Practice in front of a mirror before any announcement.

During the announcement: 

• Use body language and maintain eye contact: keep your head high and shoulders back. This non-verbal confidence will affect how your loved ones take the news.
• Adjust your voice: practice what you will say to ensure that your pitch does not go up at the end of sentences, since this could be perceived as uncertainty.

• Take pauses: be concise. Say what you have to say, stop talking, take a breath and give your loved ones time to process the information.

• Keep an open communication: let your loved ones know that you are available at all times to answer their questions.

To prepare yourself for this moment, you can consult a healthcare professional or join a local support group.

Your children’s age and maturity level will guide how you will tell them about your diagnosis. In any case, try to be reassuring.

• Keep things simple.
• Choose a calm environment.
• Use language they will understand.
• You do not have to tell them everything at once.
• There will always be time to talk about different aspects of the disease as they get older or your condition progresses.
• Be optimistic and reassuring by explaining that Parkinson’s research is progressing and will one day lead to a cure.
• Encourage them to ask you questions at any time.
• Let them know that your health condition does not change your love for them.
• If you want, prepare a small explanation with them to help them talk about your disease simply and effectively with their classmates.

Speaking about Parkinson’s disease with a teenager may be more difficult than with a younger child.  Adolescence is a unique period filled with emotional and physical changes, as well as potential conflictual relationships with parents.

Following your announcement, your child may feel angry due to internal fear. They may also be in denial, or on the contrary, be very worried and want to be heavily involved.

Your teenager may also feel embarrassed, especially around their friends. With time, they will realize that people will accept your disease, which will help them accept it better as well.

• Answer their questions honestly. If you do not have the answers to some of their questions, suggest getting informed online together.
• Reassure them by letting them know that Parkinson’s is neither hereditary nor fatal, for example. 
• Be aware that they may need more time to accept the situation.

Your children will first need to deal with the emotional shock of the announcement. Uncertainty regarding where your health is headed and the new family roles they will have to take on may then take over. Many of these fears are caused by assumptions and misconceptions about the disease. You can help them by informing them about the disease and reassuring them about the slow progression of the disease.

• Keep the tone of the conversation positive.
• Tell them about your diagnosis, symptoms and treatments.
• Insist on the fact that Parkinson’s disease is neither fatal nor hereditary.
• Avoid subjects you don’t know much about or those that only regard the distant future. Stay focused on a short to medium term that you and your loved ones can envision without creating anxiety related to uncertainty.
• Encourage them to talk about their emotions and concerns.
• Provide them with clear indications about the support they can offer right away.
• Just like with others, stay optimistic and show them that you are open to any of their questions.

By preparing yourself ahead of time, every announcement will become easier, more efficient and will better meet the needs of each of your loved ones.