I was talking to my friend/colleague/research partner Jen about my attempts to visually document my pain and patient-hood through body part selfies over frozen yogurt on Friday afternoon. During the conversation, she asked me a deceptively simple question: “Why are you attached to the word ‘patient’?” I quickly replied that I understand patient-hood as an identity that is necessary for ill people to claim in order to receive appropriate care. In my experience, medical providers must somehow read* me as an ill person before they are willing to present treatment options. (I mean, why would you try to treat someone who isn’t sick?) As usual, Jen brilliantly presented me with a compelling alternative term: health-seeker/health seeker. Over the course of our conversation, we agreed that this term might have particular affordances, i.e. benefits over “patient.” (Note: “affordances” is a popular term in rhetoric and composition studies right now, and it’s helpful for me to practice the lingo). Here are a few definitions that highlight some of these affordances via a brief Google and OED search:
Patient (adj., n): from the Oxford English Dictionary
Having or exercising patience.
Enduring pain, affliction, inconvenience, etc., calmly, without discontent or complaint; characterized by or showing such endurance.
A person receiving or (in later use) registered to receive medical treatment, esp. at a particular establishment or from a particular practitioner; a person staying in a hospital for medical treatment.
A person who suffers from an injury or disease; a sick person. Obs.
A person who or thing which undergoes some action, or to which something is done; a (passive) recipient. Chiefly in contrast with agent.
Health-Seeker/Health Seeker (n):
1832 Chambers’s Edinb. Jrnl. 1 113/2 When a health-seeker takes a walk, he keeps his coat wide open.
Health seekers are mostly interested in investigating specific physical and mental ailments and their searches often are tied to visits to the doctor. However, they do not use the medical establishment or even friends to help guide their online searches when it comes to health care. Most health seekers treat the Internet as a vast, searchable library, relying largely on their own wits, and the algorithms of search engines, to get them to the information they need. Asked about the most recent time they got health-related information online, more than 30% checked out four or more Web sites. Younger health seekers and those with relatively high educations (at least some college-level work) are the most likely to have looked at multiple sites. (from a Pew Research Center study).
We define “health seekers” as all children, youth, teens, adults and families whose successful pursuit of health and well-being requires continuously supportive relationships and environments.” (from the YMCA of the Prairie).
Note: Apparently there is also a game called HealthSeeker, which uses social networking as a way to help people manage their diabetes.
My informal search revealed that “health seeker”/”health-seeker” is most commonly discussed a) in terms of the internet as a place for seeking healthcare information and b) at the intersection of religion and medicine. Fascinating.
As a budding rhetorician, I am deeply invested in naming as a political and cultural practice. I am especially interested in how ill people create new names for themselves. For instance, Jenni Prokopy, creator of ChronicBabe.com, calls herself and the other sick “chicks” who visit her website “Chronic Babes”; Marisa Acocella Marchetto similarly names herself a “Cancer Vixen” in her graphic memoir. They have rejected the term (and perhaps the identity of) “patient” in both its noun and adjective forms. They seem to enact more of a “health seeker” persona–researching specialists and possible treatments, endeavoring to live healthy lives despite illness, etc. I mean, I can’t blame them for not wanting to come across as weak, dis-agented, receivers of treatment. Yet I wonder if “patient” can still be useful, and if and how we should use it.
Later, it occurred to me that I hadn’t considered that the rhetorical problem of naming “patients” is just one of the naming issues at stake for ill people. Much of what has bothered me in my experiences as an ill person is my medical practitioners’ desire to too quickly diagnose–i.e. provide a name–for my collection of symptoms. I have found that “fibromyalgia,” one of my official diagnoses, has worsened the quality of my care and interactions with providers because so many providers do not believe that fibromyalgia exists, and thus, they immediately dismiss my case. The underlying stereotypes about ill women attached to such diagnoses certainly haven’t improved my ability to access effective treatments nor see higher-level specialists. In fact, I was able to get a referral to a top clinic at Johns Hopkins University when one doctor identified me as a potential Ehlers-Danlos Syndome case.
Preliminary Conclusions: It seems that I don’t even have to talk about the controversy of “Chronic Lyme” vs. “Post-Treatment Lyme Disease Syndrome” to make a case for the importance of naming for ill people. I guess there is a lot more to investigate….
*”Reading” patients – I’m using this as a synonym for “assessing,” especially during intake sessions. I wonder if this is a common term or a writing thing that I’m superimposing on the biomedical sphere. If other people use “reading” as a verb in this sense, I think it adds to the current conversation about medical literacy….to be continued.