TALKING ABOUT YOUR DIAGNOSIS
• Surround yourself with people who embrace you just the way you are. Remember, at your core, you are still the same person, and it is important to have people in your support system who will show up for you and uplift you through your journey with PSP, CBD or MSA.
4. Remind yourself that you are your own best advocate.
• You can suggest that someone read about the diagnosis and then get back to you for a conversation where they feel more prepared.
• Practice certain responses that feel right to you. For example:“ That is not something I am able to answer yet.” Or,“ I do not really feel like talking about that right now.”
• Let them know what specific support they could provide that would be especially meaningful and helpful to you now and as you journey through your diagnosis.
5. Take time to prepare yourself mentally.
• Telling other people about your diagnosis can feel scary or heavy. Be aware that each experience of disclosing your diagnosis can be a reminder of the reality of your situation.
• Recognize that having these conversations may bring up emotions for you. Try not to judge these emotions or reactions. Normalize and validate the emotional journey of living with PSP, CBD or MSA.
• Notice and hold onto the positive emotions and gifts brought about by conversing about your diagnosis— such as gratitude for those in your life, a sense that a weight has been lifted off you once certain people know about your diagnosis or a sense of empowerment that you advocated for yourself and educated others.
Talking With Children
How you share your diagnosis with children in your life, such as grandchildren, young adult children or even older adult children, is often approached differently than conversations with others in your support system. How and when you share your diagnosis with a child can depend on a number of factors like their age, their learning style and communication patterns, and your relationship with them. Young and older adult children alike are often very observant and may have noticed changes in you before you tell them. Young children may be more blunt in their questions and observations. Also, some younger adults and children may not always have the capacity or experience yet to process the full implications of your situation or their own emotions.
Prepare yourself to talk with children in your life about your diagnosis.
• Choose a time that is calm and not emotional, and when nothing else is on the schedule. Don’ t blindside children.
• Cut down on distractions during the conversation so that you can really focus and listen to one another.
• Speak in a calm and clear manner.
• Tailor the information you provide to the child’ s level of maturity and understanding.
• Especially with children younger than 10 or 11 years old, keep conversations simple and short. Wait for them to ask questions before diving into additional information. Remain aware of cues as to when the child has heard enough.
• Be prepared for questions as to how your disease will affect the child. Adult children may be concerned about who will care for you and how.
• Clearly state that your illness is not the child’ s fault, not contagious and not genetic.
• Invite them to express their feelings, concerns and questions.