Parkinson’s has a publicist. The publicist chose tremor because tremor photographs well.
A shaking hand fits neatly into a television clip, a brochure and the five seconds most people are willing to spend learning about a neurological disease. It is visible, recognizable and easy to convert into the entire story.
Pain did not get the job. Pain apparently lacked charisma.
People look for shaking, and if they do not see much, they may decide Parkinson’s is mild, controlled or not doing very much at all. Meanwhile, the person standing in front of them may be dealing with rigidity, cramping, dystonia, aching muscles, joint pain, nerve-like pain, fatigue or the physical consequences of a body that no longer moves normally.
Not everyone with Parkinson’s has the same symptoms, and not every pain in a person with Parkinson’s comes from Parkinson’s. Bodies are inconveniently complicated that way. Pain still deserves to be described, investigated and treated seriously instead of being dismissed because it cannot be photographed from across the room.
The public misunderstanding begins with a simple mistake: visibility gets confused with severity.
Tremor can be deeply disabling. This is not a competition between symptoms, and nobody wins a trophy for having the least cinematic nervous system. The problem is allowing the symptom outsiders recognize to become the ruler used to measure everything they cannot see.
That ruler is useless.
Invisible pain changes how long someone can sit, stand, sleep, concentrate, work, exercise, socialize or pretend to enjoy a chair designed by the same people responsible for airline legroom. It can shorten a day without announcing itself. It can drain patience without changing facial expression. It can make an ordinary task expensive while leaving no dramatic evidence behind.
Then comes the second injury: disbelief. If a person looks steady, sounds calm or manages to participate, the pain is treated like a claim requiring supporting documentation, witness testimony and perhaps a sworn statement from the lower back.
That pressure teaches people to perform their suffering. We learn that quietly managing a symptom can make others doubt it exists. The better we become at living with pain, the less credible the pain appears.
That is a rotten reward for adaptation.
After thirty-five years with Parkinson’s, I know the disease is much larger than the part an observer can identify. The outside view is a trailer. It is not the whole damn movie.
What needs to change is the question. Stop asking only, ‘How is the tremor?’ Ask what hurts. Ask what interferes with sleep, movement, concentration and daily life. Ask what has changed even when nothing obvious is shaking. Then listen without using appearance as the answer key.
TODAY’S DEFIANT TRUTH:
Tremor has a publicist. Pain has to prove it exists.
The symptom that photographs best is not automatically the symptom that costs the most. Visibility is not a severity scale.
See beyond the shaking. Believe what the camera misses.
Live Defiantly. — Richie Pikunis