Patienthood and Personhood

February 10, 2012 at 4:58 pm (Living With Chronic Illness, Medical) (, , , , , )

I don’t usually use this blog to just repost links, but I’m short on time and am afraid I might lose this link in the process. I’ll give you a little bit of insight into the following article (which I got from Notes from a Barking Shaman, Wintersong Tashlin’s blog.

The article is here. It is called From Personhood to Patienthood, and talks about the dehumanizing process of becoming a medical patient.

I try very hard to humanize myself with my doctors. I tell them stories, I carry lunchboxes, I wear funny tee shirts, I talk about my sex life, whatever I think is going to shock them out of their “doctor” head enough to see that I’m a lot more than whatever brought me in today. Part of this is a scheme: I know that my diagnosis will eventually require many of my doctors, or at least many specialists, to communicate about me and my diagnostic history. And to do that meaningfully, they need to know who the fuck I am beyond notes in a file. My neurologist knows me as the person with the purple hair, even though that happened four years ago. My pain management doc knows me as the patient with the lunchboxes who teaches BDSM. My GP? I’m not sure I’ve made an impression on him yet, other than “the patient who is on a lot of narcotics”. I’m trying, though. Even my dentist knows me as the one with the tight mouth. (Don’t ask.)

When I’m in the hospital, I try to remember that my nurses and doctors and everyone else I interact with is having a boring, difficult workday. Although I am a wild one when I’m not getting the right kind of treatment, I’m also the funny, laid back one who asks how their day is going and notices personal touches on their outfits. I compliment their hair, or their glasses, or even their Crocs if I have to. I look for a way to be “the cool patient”. I find that way, I am more likely to get a quick response when I need actual help; they’re more likely to bend the rules for me; and they might slip me an extra jello when no one’s looking. They also remember what’s wrong with me, and can act as a secondary medical advocate if someone in the process is being a douche.

For example, I was in the hospital some years ago with abdominal pain. We know now that it was a hernia, but back then it was just this crippling pain that kept me coming back to the ER because I was vomiting and shitting and well, basically, my GI system was on strike. But the hernia didn’t show up on imaging, and I didn’t have any signs of infection, so it was pretty frustrating. The general surgeon came to see me, and told me that if I didn’t stop complaining of pain, or complaining that my pain was as severe as it was, that he would have to do exploratory surgery to see if he could find what was wrong with me. And the risks for blind exploratory surgery were astronomical, in his opinion.

Like a normal human being, I got really upset. I was in 9 out of 10 pain, couldn’t hold down food, and now I faced the choice of risky surgery or lying about how I felt. A nurse I had befriended came in and saw my distress. She asked me what was wrong, and I told her what had happened with the general surgeon. She got Righteously Angry on my behalf, because it wasn’t his right to try to “scare” me out of surgery. Within a day, I had a new, better surgeon who eventually found the hernia and repaired it.

I also battle the dehumanization of being a “patient” in my personal life. There are times my caretakers get so caught up in seeing me as a sick person, they forget that I’m still a person underneath all the illness. A person who likes to laugh, fuck, go to movies, have a say, dance, and all those other things humans like to do. Sometimes I have to resort to pretty extreme behavior (surprise blowjobs?) in order to shock them out of thinking of me primarily as a “sick person”.

Eh, enough of my rambling. I should have been in the shower two hours ago. Go read the article. It’s good stuff.

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1 Comment

  1. Fala said,

    I had to mention: Kit is very, very good at exactly that. He’s been teaching me over the years; it’s very helpful with anyone we see semi-regularly. We amuse checkout clerks, delightfully baffle our doctors, and once made a hospital nurse laugh so hard he “quit” three times in an hour. They remember us, and we get to make them laugh. It’s a win-win. 🙂

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