I am a person first. Patient second. Participant third.
Person is my birthright. Inalienable. Not open to argument. Irrevocable until the moment I die.
For many years patient was a temporary or transitory state of being. As in, today I wore blue. Or, on Thursday I made mashed potatoes for dinner.
That all changed in April of 2005, when I first learned that I had lung cancer. From that moment forward I have been a patient.
Just as I shall be a person until I pass, so too shall I remain a patient. When I enrolled in my first clinical trial in October of 2008, I added the third P: participant.
Participant as a state of being comes and goes. However, with more than a decade spent in clinical trials, it too is almost a constant. Not a birthright, also not a given. A privilege. And a burden.
A participant is a different sort of nuance than person or patient. De-identified, if you will. Valued not as an individual, but rather as an aggregate. A data point.
However, you can be a person but not a patient or a participant. Or a person who is a patient but not a participant. But if you are a participant, you are still a person and in most cases, a patient as well.
These distinctions are not mere wordplay. When I make a statement to the effect that I am more than my tissue, I am a human being–this is what I am referencing.
Person first. Person always.
life and breath: outliving lung cancer 