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I have been involved in chronic illness and advocacy for a long time, but the terms ‘patient,’ ‘patient advocate,; or ‘patient expert’ has never sat well with me. In my new article for CreakyJoints Canada, I talk about why:

“I dance every day, but not to music. As someone with rheumatoid arthritis (RA), I spend a lot of time doing a daily dance of taking medication, resting, moving my body without overdoing it, eating food that nourishes rather than triggers symptoms, educating myself about my condition, and advocating for myself and the chronic illness community.

Despite this immersion in all things chronic illness, I don’t consider myself a patient outside of my relationship with my doctors. Rather, I am a person who has rheumatoid arthritis.

Let me tell you how I got here and what not being defined or identified as a patient means to me.

Whenever a word makes me feel uncomfortable, my first step is to look it up in the dictionary to find clues to explain why. On Dictionary.com, the noun “patient” is first described as a person who is under medical care or treatment. This is of course true for me — even when I’m not sitting in a doctor’s office, the nature of my chronic illness means that my treatment is ongoing, too.

But it’s the second description of the noun that reveals why I am uncomfortable: a person or thing that undergoes some action.

Being a ‘Patient’ Implies Playing a Passive Role

Our health care model assigns staff (nurses, doctors, etc.) the active designation as providers of care and assigns patients the role as passive recipients of care. If you look at the history of health care, back to the time when doctors were seen as gods issuing orders patients should follow or else be deemed noncompliant, you can see how much of that thinking and language is still around today. Thankfully, we are making a shift to a perspective that values empowered patients and doctors  are increasingly understanding that care improves when the patient-doctor relationship is collaborative. But it’s a work in progress and the perception of patient as passive is still alive and kicking deep inside.”

Read more about why I don’t consider myself a patient on CreakyJoints Canada.