TALKING ABOUT YOUR DIAGNOSIS
• Consider asking someone to role-play with you the scenario( s) in which you reveal your diagnosis to another person.
2. Consider what information about your diagnosis you would like someone to know.
• How you tailor the conversation will largely depend on the nature of your relationship, such as your child compared to a close friend or a coworker.
• Educate them about your illness as you understand it and with the specific information you would like them to be aware of.
• Invite friends or family members to attend a support group, educational symposium or doctor visit with you. In these ways, people in your support system will learn more about the disease.
• Describe some of the changes you are experiencing.
• Share how you are feeling about this unanticipated change in your life.
• Let them know about the support you are currently receiving from family, healthcare professionals and others in your support system and what support you are needing at this time.
• Think of the first conversation as laying the groundwork for conversations down the road.
• Direct someone to printed or online resources to learn about your diagnosis or to seek additional support in their role in your care. Support groups and educational materials can be found at www. psp. org / ineedsupport
3. Recognize that each person will have varying perspectives, questions and emotional responses.
• Reflect on the( often many) emotions you experienced when you were first diagnosed with PSP, CBD or MSA and those you have experienced in the time you have had to process the diagnosis since. Perhaps you have felt shock, grief, fear, sadness, anger or numbness. Sometimes people may also feel relief or appreciation for finally arriving at a diagnosis and having some answers. It can be an emotional rollercoaster and feel overwhelming at times. These emotions will likely also be experienced by others when they learn the news of your diagnosis.
• Anticipate questions that someone might ask you regarding your symptoms, diagnosis and preparations for the future.
• Be prepared for comments such as:
-“ I wondered if something was going on. You have seemed different, but I wasn’ t sure what to say to you about it.”
-“ But you look so good!”-“ Are they sure that is the diagnosis you have? Have you pursued a second opinion?”
-“ I just read an article the other day about [ fill-in-the-blank medication, supplement, exercise or other treatment approach ]. Have you tried that to see if it would work?”
• Sometimes people will offer information and advice. This may be helpful for you, but if it is not what you are looking for in that moment, you can share that with them.
• Someone may react with too much positivity or not enough, depending on what you are needing from them.
• Unfortunately, not everyone will be able to handle this change in your life. This inability could be for a variety of personal reasons, including that they do not know how to cope with the sadness of seeing you change, or perhaps your diagnosis triggers other memories of illness for them or fears of their own mortality. Sometimes this situation leads to the person having a very intense emotional reaction that is not helpful for you, leaving you feeling like you need to support them. It is possible that some people will distance themselves from you. If someone reacts negatively, please remember that it is not your fault.