TALKING ABOUT YOUR DIAGNOSIS
• Give the child time to think about your diagnosis and the information you have shared.
• Encourage future conversations.
As Time Goes On
Even after an initial conversation or two, your extended family members, friends or colleagues may not understand your condition or its symptoms as things change over time. Individuals may feel uncomfortable reopening the subject with you. Perhaps they are waiting for a cue or invitation from you. Or they may simply not know what to say or do.
If you have the desire and emotional and physical energy to reach out to others, you might want to:
• Share what your life is like now and what has changed since the last time you spoke.
• Describe what you are still able to do and are interested in doing.
• Ask them to talk about your diagnosis more, if you feel like it is not discussed enough. Or, ask to talk about it less, if you are feeling that conversations and life are revolving around it too much.
• In specific terms, inform people about the kinds of concrete help and emotional support you need and would appreciate at that time.
Takeaways
Ultimately, it is your decision as to whom you tell about your diagnosis, what you say and when you share it.
• Set your own pace.
• Advocate for your needs.
• Your goal is to maintain and strengthen your relationships with those people you care about and who care about you.
• Focus your physical and mental energies on the relationships that respect, protect and enhance your well-being in this journey.
• Remember that you are not alone. CurePSP, those in your personal support system and the PSP, CBD and MSA community are here for you.
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