TALKING ABOUT YOUR DIAGNOSIS
Talking About Your Diagnosis
Receiving the diagnosis of a neurological condition, including progressive supranuclear palsy( PSP), corticobasal degeneration( CBD) or multiple system atrophy( MSA), can be a very emotional experience. The same is also often the case for those close to you, including your partner, children, extended family, friends and professional associates. These emotions are on top of the physical changes you have noticed and had to make accommodations around as well as the questions, care considerations and decisions that have arisen as a result of the diagnosis. Disclosing your diagnosis to others in your circle is part of this experience. The decision to tell others about your diagnosis is yours alone, and there is no right or wrong way to go about it. For many with PSP, CBD or MSA, it can take a while to process diagnosis to the point where you feel more prepared to share it with others. Inevitably, a time will come when you will want to, or even need to, disclose and discuss your condition with others.
There are many factors that can influence the decision to share this news:
• Your understanding of your diagnosis
• If you have the information and the support from your healthcare team that you need
• How you typically communicate important information and emotions
• If you are feeling emotionally ready
• How obvious your symptoms are, and particularly if others are starting to notice
• Whether or not you are working
• The makeup of your support system
• Your individual relationship dynamics with people in your life
It is natural to experience some hesitation and anxiety around having such a conversation. You may be asking yourself:“ What should I say?”“ How will people react?”“ Will I be able to handle others’ feelings when I am already dealing with so much uncertainty and so many emotions?”“ What if someone reacts with pity?”“ What if people ask questions I cannot answer?”
The purpose of this document is to help you think through and decide how, when and what you might want to share with others about your diagnosis.
Preparing To Disclose Your Diagnosis
Reflect on possible approaches, considerations and steps: 1. You can enlist the support of others as you prepare to share the news.
• You could include your partner, trusted friend, spiritual leader or a professional( such as a therapist or a member of your healthcare team) in a planned family discussion.
• If you attend a support group, ask the other members how they have shared the news with others and what advice they have for you.