Some people hear the word Parkinson’s and immediately become investigative journalists with no editor and a deeply flexible understanding of privacy.
The questions can arrive before the relationship does. When were you diagnosed? What medications do you take? Is it getting worse? Can you still drive? What happens next? The tone is often friendly. The subject is still my body, my treatment and my future.
People see curiosity. They may even see concern. Because the diagnosis is visible or already known, the questions can feel harmless—just an attempt to understand something unfamiliar.
What is actually happening is a quiet transfer of authority. The person asking decides the topic, the level of detail and the moment of disclosure. The person living with the condition gets several seconds to choose between answering an intimate question or looking rude for having a boundary.
That is a lousy little choice dressed as conversation.
A diagnosis can explain something about my body without turning my body into public property. Knowing that I have Parkinson’s does not automatically create a season pass to my symptoms, prognosis, medical decisions, bathroom habits, emotional state or the private calculations behind an ordinary day.
This is not an argument against questions. Honest questions can create understanding, and I have spent years talking publicly about Parkinson’s because I chose to. The important word in that sentence is chose. Speaking openly in one place does not make every part of me permanently open in every room.
Context matters. Trust matters. Timing matters. Some days I may want to explain everything. Some days I may want to discuss the weather, a terrible football game or literally anything that does not require turning my nervous system into the evening’s educational programming.
The cost of casual interrogation is easy to miss because the answer may sound calm. Behind it is another calculation: How much do I reveal? Will honesty change how this person sees me? Will a short answer invite more questions? If I decline, will the boundary become the new subject?
That labor adds up. A person with chronic illness already spends enough time translating the body for doctors, insurers, family and systems. Social life should not require producing a documentary every time somebody notices the plot.
There is another cost. When diagnosis becomes the fastest route into conversation, the person disappears behind it. Curiosity about the disease replaces curiosity about the human being. I become interesting because something happened to my nervous system, not because I might have an opinion, a joke, a history or a reason for being in the room that has nothing to do with Parkinson’s.
What needs to change is simple: ask permission before asking for detail. ‘Do you mind if I ask about it?’ is not bureaucratic. It gives the other person a door, including the right to keep it closed.
If the answer is brief, let it be brief. If the subject changes, follow it. If somebody shares one part of the story, do not treat it as an invitation to search the entire house.
And try asking questions that belong to a person instead of a diagnosis. What are you working on? What made you laugh? What do you think? Those questions do something medical curiosity often forgets to do: they leave room for an identity larger than the condition.
TODAY’S DEFIANT TRUTH:
My diagnosis is not your icebreaker.
A diagnosis can explain something about my body without turning my body into public property. Curiosity is not consent.
Ask with respect. Listen for the boundary. Remember there is a person on the other side of the answer.
Live Defiantly. — Richie Pikunis