Am I (a) patient?

1. able to wait without becoming annoyed or anxious.
1. a person receiving or registered to receive medical treatment.
2. Linguistics the semantic role of a noun phrase denoting something that is affected or acted upon by the action of a verb.

ORIGIN Middle English : from Old French, from Latin patient- ‘suffering,’ from the verb pati. (from the Oxford American Dictionary)

Sharon’s prompt for this month’s PFAM (Patients for a Moment) blog carnival at “After Gadget” asks if I refer to myself as a “patient,” and why or why not. To be honest, I rarely refer to myself as a patient unless I am describing myself as being under a particular medical practitioner’s care, as in “I’m a patient of Dr. Smith,” or when I call myself a “Patient Advocate,” which has to do with my advocating on behalf of other people like me who are tangled up in the healthcare system.

In re-reading the definition above, I’m struck by the difference between French and English when it comes to labeling individuals who receive medical care. In French, as in English, the term patient (or patiente) is used when a doctor describes an ill person in his or her care (a sick person acted upon by a doctor). But an ill person or a hospitalized person is a malade. While we can hear the echo of the English word “malady” here, malade doesn’t have the same combined wallop of the noun “patient,” connoting suffering and passivity.

Yes, I suffer, as all living things must eventually, but I am rarely resigned and uncomplaining in the face of that suffering, particularly when there are things I can do or change to help alleviate it. Even if the change is as small as altering my perception of an event or experience.

I’m not sure, however, that I would have used the term “patient” much to describe myself anyway, even if I didn’t know the etymology. I’ve been doing academic work in gender, sexuality, and disability studies for too long not to have internalized the argument against using someone’s difference as their primary description (e.g. “He’s gay,” “She’s disabled/handicapped,” etc). The lessons of identity politics have trained me to be sensitive to these kinds of reductive statements, instead using phrases like “He identifies as gay,” or “She’s a person with a disability.”

While I’m sure this kind of verbal gymnastics seems either basic or unnecessarily complicated to some people, it prevents us from reducing an individual into his or her most prominent—or visible—identity category. So in essence, I’ve been trained intellectually not to think of myself as a patient, but rather to think of myself as a person with a chronic illness, just like I’m a person with a gender and a nationality, and a whole bunch of other identity categories with which I identify to varying degrees. When someone asks, I generally say “I have an autoimmune disease” or “I have a disabling chronic illness.” Not “I suffer from…” or “I am a patient with…” or “I am disabled by…” but “I have.” (And sometimes, as a bit of a pep talk, I remind myself that I may have lupus/RA, but they don’t have me.)

Perhaps it’s easier with an “invisible” illness and disability, but I rarely feel as though there’s any danger that acquaintances or strangers will reduce me to my illness (or if they do, once I tell them, then I have simply saved myself a great deal of heartbreak in the long term). I find that I struggle more often with trying to get my close friends and family to understand how having a chronic illness affects me, and to find a balance where they can be flexible and receptive to my needs, but not treat me as though I were impossibly fragile all of a sudden. Because if having a chronic illness has taught me anything, it’s that I’m far stronger than I ever thought I was.

Am I kind? Yes. Am I tenacious? Yes. Am I (a) patient? Only when I must be.

Limp Resistance (an oxymoron?)

“Dripping water hollows out stone, not through force but through persistence.” —Ovid

 I have spent most of my life fighting pain. To the point that I don’t really know what it feels like to not have the sensation of pain buzzing around in the periphery of my consciousness. I say “fighting pain,” because it’s literally been a fight for my joints by my muscles. This is something I’ve only noticed recently, in the course of some intensive deep tissue massage work and by using foam rollers on the stubbornly tense muscles of my arms and legs.

The very structure of my body has been shaped by its own attempts to thwart joint pain. I’ve activated muscles in my thighs and calves that guide my knees when I walk, muscles in my upper arms that adjust the way my elbows bend, muscles in my forearms that restrict the movement of my wrists. These muscles are thick and ropey, unexpectedly tight. It is as though my body has developed its own internal splints. I notice that these muscles are in a state of hyper-tension all the time, not just when they’re in use. They are vigilant for me, even when I am not aware of it. My body has been trying to protect me, but it can only do so much.

As I try to convince these helpful muscles to relax, because they have now begun to overcompensate and cause pain, I am reminded of something my father told me once. He said that if I was ever in a car accident and knew I has going to be hit, that I should go limp, like a rag doll. That my inclination would be to tense up, but that this would ultimately result in more damage to my body. It’s like holding a cup of coffee in a moving vehicle—you have to make your arm soft and let the cup move with the movements of the road (or water, or air… and the liquid!) rather than against them.

Which makes me wonder: How can I “go limp” in the face of pain more often? Can I do it in response to any negative feelings or sensations? Maybe this is a kind of picking one’s battles; knowing when to tense up and when to go limp; knowing when your opponent is looking for resistance or looking for passivity; being the water rather than the stone.