There is an unofficial dress code for being sick in public: clean shirt, brave face and just enough suffering to be believable without making anybody uncomfortable.

You are supposed to explain yourself clearly, wait patiently, accept help graciously and remain emotionally pleasant while your body, your plans and occasionally the healthcare system take turns kicking you in the teeth.

Apparently, illness is acceptable. Bad customer service is where society draws the line.

People see frustration, a flat expression, a short answer or somebody who has run out of polite little reassurances. They decide the person is difficult, negative, ungrateful or not trying hard enough to help themselves.

What they may actually be seeing is pain, fear, fatigue, medication timing, cognitive overload, depression, a voice that will not cooperate or the final thread of patience after explaining the same reality for the sixth time. Parkinson’s can affect movement, expression, speech, sleep, mood and thinking. Then we are judged by how gracefully we package the damage for public consumption.

I am not arguing for cruelty. Being sick does not grant anyone permission to abuse the people trying to help. But there is a wide distance between abuse and failing to perform cheerfulness on command, and we keep pretending they are the same thing.

That confusion has a cost.

When care depends on likability, people learn to edit themselves. We soften the pain, apologize for asking questions and add a smile so nobody mistakes neurological flatness for hostility. We spend energy managing the room instead of describing what is happening in our bodies. The appointment becomes an audition, and the role is Grateful Patient Number Three.

Those who cannot perform the role may receive less patience, less curiosity and less belief. Their legitimate anger becomes a personality problem. Their fear becomes noncompliance. Their exhaustion becomes laziness. The emotional reaction to being dismissed is then used as evidence that dismissing them was reasonable.

That is a neat little system. The patient loses twice, and everybody else gets to call it professionalism.

After thirty-five years with Parkinson’s, I know how much effort it can take to make other people comfortable with a disease they only have to witness for a few minutes. I also know that comfort is not the same thing as care.

Real care leaves room for a human response. It asks what is underneath the frustration without automatically rewarding bad behavior or punishing an unsmiling face. It sets boundaries when necessary, but it does not make warmth, eloquence or gratitude the entrance fee for dignity.

I may be calm. I may be angry. I may be funny because humor is how I keep the machinery from catching fire. None of those moods determines whether my symptoms are real or whether my voice deserves to be heard.

TODAY’S DEFIANT TRUTH:

I should not have to be pleasant to deserve care.

Respect that disappears when I become inconvenient was never respect. It was approval with conditions.

Treat the person, not the performance. Dignity is not a customer-service reward.

Live Defiantly. — Richie Pikunis