I am drowning under an epic pile of student papers at the moment. More soon. ♥
The last week or so has been quite a rollercoaster, both internally and externally. I gave a lecture to my class a few weeks back and we talked about the word “ambivalence.” Most of my students thought it meant “indifference” but I explained to them that the meaning is closer to “pulled in two directions simultaneously,” that the Latin root means “both strong.” (This was explained to me by a psychology professor years ago, which echoed a passage I read in high school from Girl Interrupted where Susanna Kaysen receives a similar correction from her psychiatrist). And boy do I feel ambivalent right now. After several weeks of feeling optimistic, everything has ground to a screeching halt.
Medical kvetching below the cut.
My rheumatologist died suddenly and unexpectedly of a heart attack last week— the same week I was scheduled to see him for a follow-up on my methotrexate (MTX) treatment. Obviously my appointment was cancelled. One the one hand, I feel like a jerk to be mourning, since I wasn’t particularly close to him on a personal level, certainly not in the way that his family and friends were. But he was the first doctor in a long time to really listen to me, and he gave me hope that we were getting closer to figuring out what exactly was causing my symptoms (Lupus? RA? MCTD?), and how we were going to treat them. He was a kind, empathetic, and caring doctor and just a genuinely nice human being.
As recently as last weekend I was feeling really optimistic about the improvements I’d seen with the MTX– my pain levels were down, my energy was up a little, and I felt like the pendulum was on an upward swing. I no longer feel that way. Whether it was the stress and anxiety of the week or just the natural variation of my disease, the last five days have been excruciating. I found out about my rheumatologist and then struggled to get an appointment with my primary doctor in order to a) get a new rheumatology referral, b) begin the search for a new rheumatologist, c) struggle to actually get an appointment (it took four tries to even have the insurance referral processed, which I had to do before I could get an appointment), and d) have the blood work done to check my liver function and CBC.
The good news is that my liver seems to be fine. The bad news is little more pervasive. With my rheumy’s encouragement, about four weeks into the MTX I had managed to wean myself off my 1200+ mg of daily ibuprofen habit. So much for that. All the ugly inflammatory symptoms are back with a vengeance, including the fiery gnawing sensation in my hands and feet, the skin rashes, the low grade fevers, and the extra 3-5 lbs of water weight that always accompanies a flare. Plus, according to my recent blood work, something is up with my kidneys and my creatinine levels are elevated. It could be the MTX, it could be lupus, or it could simply be a fluke caused by not drinking enough water prior to the blood draw. So I’m back on the ibuprofen, hoping it won’t combine too aggressively with the MTX to beat up my liver, and in a sort of medical no-mans-land about my kidneys until I can get in to see a different rheumatologist, which won’t be for almost another four weeks.
Managing my insurance is another headache in all of this. It’s not clear if the new rheumatologist will be considered “Core” or “In-network,” meaning I may be liable for a $200 deductible plus copay and 20%. And then there’s my $2000 prescription limit, which is going to prevent me from trying any of the biologics unless I can get prescription assistance. None of this is helping my anxiety level or my ability to be “in the moment,” mindfulness meditation or not. Because to be truthful, the moment kind of sucks right now. But I soldier on, correcting papers, meeting with students, trying to work on my own research but feeling fuzzy-headed and discouraged.
I’m waiting for the pendulum to swing back to optimism…. any day now, please.
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.
I’ve been thinking a lot lately about anonymity and privacy on the web, and I have to admit I’m feeling mighty ambivalent. Which is not to say indifferent; I mean ambivalent in the “moving back-and-forth between two poles” sense. I have strong feelings about both positions.
When I started this blog, it was in the months prior to my initial diagnosis, when I was sick and undiagnosed, stressed out by my PhD exams, and grappling with the emotional fallout of a breakup. I was just looking for a place to vent a little, and to write things down so that I might get some sort of pleasure or closure by ordering and narrating the events of my own life.
But then I got diagnosed with lupus, and I realized I couldn’t talk to very many people in my everyday life about what was going on. So I joined several forums, I created a Twitter account, and I started collecting (and connecting) to other blogs about lupus, arthritis, and autoimmune disease. Somewhere in the middle of all of this, I applied—and was accepted— to be an ACR Advocate for Arthritis. Suddenly I had gone from Megan: Autoimmune Girl Blogger to Megan: Autoimmune Arthritis Patient Advocate.
And here is where the great ambivalence set in. I know that I could be a more powerful force as a patient advocate if I revealed my full identity, but I also know there are consequences to the choice to “come out” and tell my story publicly.
I say a lot of revealing things in my guise as “mirroredlens.” I talk about my diagnoses, my meds, my pain, and my interactions with medical practitioners. I write about my experience of being visibly and invisibly ill and disabled, and how this affects my self-identity, my being-in-the-world, and my goals and fears for the future. I do this because it helps me make sense of my life. But I also do it because I’ve relied on the same kind of first-person narrative from other bloggers and writers to guide me and comfort me, and I want to be able to offer the same kind of guidance and empathy in return.
Despite all of my “virtual” honesty, the group of people I interact with face-to-face who know the details of my illness is relatively small. Partly this is because my diagnosis has been provisional for so long and I prefer to do as little explaining as possible. (“Huh? Wait, I thought you had lupus. Now you have RA too?”) But also because a) I am allergic to pity; and b) I am all-too-aware of the implicit and explicit discrimination toward people with disabilities. And it’s that second part that keeps me from removing my not-particularly-opaque veil of anonymity.
Now clearly I haven’t done a whole lot to obscure my identity on here– I have a photo (yes, that’s really me) and I use my first name. But I haven’t made any explicit links to other parts of my life, online or otherwise. Why? Because I am still (meds and disease activity willing) committed to pursuing a career once I finish grad school, and I am concerned that by disclosing my status too publicly I will jeopardize my chances at an academic job. (Google has a very long memory and the academic job market is ridiculously competitive. The reach of the ADA only goes so far.) It shouldn’t be that way, but it is.
So for now, my identity as a blogger remains separate from my identity as an academic, and my advocacy work falls somewhere in the middle, tenuously connecting the two. I know that I could be a stronger advocate by making those links legible, and I would likely also strengthen my academic work on disability theory by disclosing my status as a person with a chronic illness. But I also know that there are long-term consequences to that kind of candor, consequences that I’m not yet ready to negotiate.
Hello blog, sorry I’ve been away. Life got in the way and suddenly it’s three weeks later with no updates. I was busy teaching while you were just lounging around the pool, I’m sure. Or whatever it is that blogs do when they’re not being attended by their creators.
I spent the last three weeks teaching in a program for gifted teens. It was both amazing and exhausting. And reminded me why I don’t teach middle school or high school during the rest of the year. Most teenage boys have so little impulse control it’s comical.
In some ways, it was good for me to keep busy. My uncle died suddenly of a heart attack a few weeks ago, so I’ve been doing a lot of thinking about living purposefully and not taking anything for granted. On the one hand, I think being chronically ill makes me more aware and more appreciative of everything that’s going on in my life, but there are some times when it just feels like I’m enduring my life until something changes. Granted, when it comes to my health, I don’t always have the power to change it, or the change will come slowly, if at all. (I’ve been through enough cognitive behavioral therapy to be convinced of the power of positive thinking, but there are limits to what the human body can do and feel in any given situation). What I need to avoid is taking that sort of “endurance” mentality and applying it to other things that are within my power to change. I don’t have to spend time with people I dislike, or who make me feel less-than. I don’t have to make and honor commitments that other people try to pressure me to make when my gut tells me “no.”
In other news, this relentless heat (and its accompanying $180 power bill) does not make me happy. I can’t remember the last day it didn’t hit the low 90s. While my arthritis tends to do better in the heat, nothing else does. Well, no chillblains either, but there’s plenty more to worry about. I’ve been coating myself in sunscreen every day before I leave the house, but even that doesn’t seem to be enough to keep me from reacting to casual sun exposure (driving to work, walking from one building to another). I have a lovely rash all over my chest and shoulders that looks like acne. I almost wish it were acne– at least then it might respond to something other than steroids.