Parkinson’s did not just give me a disease. It apparently hired me to manage the department.
The position comes with no salary, no lunch break and no possibility of promotion. The boss is unpredictable, the filing system was designed during a hostage situation and Human Resources keeps transferring me to the pharmacy.
People see the symptoms. They see an appointment, a prescription, maybe a pump or another piece of treatment. From the outside, healthcare looks like something a person receives.
From the inside, it is also something a person has to run.
There are refills to request, supplies to order, appointments to schedule, records to find, forms to complete, insurance questions to untangle and phone calls that begin with hold music and end with a completely different department explaining why the first department was wrong.
There are symptoms to notice, changes to remember and questions to save for the brief moment when the person who might answer them is finally in the room. There are calendars, portals, transportation, instructions and enough passwords to make the disease itself feel under-secured.
Each task looks small by itself. Together they become a shadow workload attached to the illness.
That workload lands on the same person already managing fatigue, pain, movement, speech, sleep, mood or thinking changes. The machinery affected by the disease is expected to operate the machinery required to treat it. Apparently, irony is covered by insurance even when everything else needs prior authorization.
When something gets missed, the failure is usually assigned to the patient. The form was late. The refill was not requested soon enough. The appointment was forgotten. The instructions were misunderstood. Somewhere along the line, healthcare quietly decided that receiving care required becoming an unpaid project manager with excellent executive function.
The cost is not merely annoyance. Administrative friction consumes time and energy that could have gone toward movement, relationships, work, rest or anything resembling an actual life. It delays care. It creates shame. It shifts more labor onto family and care partners who are already carrying their own invisible jobs.
Then we call people noncompliant when the system finally exceeds their capacity.
What needs to change is not another motivational speech about being organized. People need fewer repeated forms, clearer instructions, reliable reminders, one point of contact when possible and real help navigating approvals, pharmacies and benefits. Clinicians need to ask not only whether the treatment works, but whether the patient can realistically manage everything required to receive it.
And those of us living it need permission to admit that the administration itself has become a symptom of the system. Asking for help with paperwork, calls or scheduling is not surrender. It is delegation, which is what every competent manager eventually learns before the building catches fire.
TODAY’S DEFIANT TRUTH:
Parkinson’s hired me to manage Parkinson’s. The pay is terrible.
The illness takes energy. Managing the illness takes what is left. The symptoms are only one shift.
Make care easier to receive, not another test the sick person has to pass.
Live Defiantly. — Richie Pikunis