Monday, October 24, 2011

Grumpy Monday Post: Dear Passive-Aggressive Neighbor Who Leaves Obsequious Notes,

No, I am not just making noise to annoy you, I am making noise because that's what happens when one cleans one's home. Vacuums are noisy. Cleaning requires walking around. And I am polite enough to limit my cleaning activities to the hours between 11am and 8pm. We can discuss alternatives, but unless they involve YOU quietly sweeping and scrubbing MY apartment, I suggest you invest in some earplugs so that my elephantine footfalls and cataclysmic vacuum noises do not irritate your delicate constitution.
And here I was feeling virtuous because I'd actually mustered the energy to vacuum and do a load of laundry!

Sunday, October 23, 2011

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.

Monday, October 17, 2011

To be [anonymous], or not to be [anonymous], that is the question

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.

Wednesday, October 12, 2011

World Arthritis Day - 12 October 2011

I posted the following letter to my Facebook account today, in honor of World Arthritis Day. I know most of the readers of my blog are already far too well-acquainted with autoimmune/inflammatory arthritis, but for those of you who aren't, or who are interested in the current "arthritis situation," particularly in the US, see below.

Dear friends,

This is long, so I want to thank you in advance for reading. I've put some key points in bold, so feel free to skim. It means a lot to me that you are kind (or curious) enough to click though and read this.

If, on second thought, you only have a minute, forget everything you thought you knew about "arthritis," and go read this 60 Second Guide to Rheumatoid Arthritis (RA).

If you're up for a bit of an essay:

Sunday, October 9, 2011

It's the most wonderful time of the year? (Stream of Consciousness Sunday)

There's some sort of drama going on in my extended family right now, and I don't really know all the details, but my parents are trying to convince me that we should have a small, immediate-family-only Christmas in Georgia. On the one hand, I'm a bit miffed that no one will get down to brass tacks, so to speak, and just tell me what's going on. But my family is notoriously passive-aggressive, so I can't say I'm surprised. At first, I wasn't sure what I thought about this plan for the holidays. But I realized that I don't really care. Or, more truthfully, that the place doesn't matter. And that it's kind of a relief to contemplate only having to spend the holidays with my closest family members, and not play nice with all the extended family in-laws and friends and random people who show up just to eat our food. The lead up to the holidays is generally stressful and exhausting for me, so I'm warming up to an alternative possibility. We'll see, however, if my family is capable of making anything easy and stress-free.


Tuesday, October 4, 2011

Weekly News Recap

Floating Holiday Candles in Reflection Pool  

There are two ways of spreading light: to be the candle or the mirror that reflects it. —Edith Wharton

 For those of you who don't follow me on Twitter, I often post news links related to lupus, RA, and autoimmune disease. Here are a few highlights from last week:

One of the most exciting pieces of news I came across was the summary of a research study that discovered a nutritional supplement (a sugar similar to glucosamine called N-acetylglucosamine [GlcNAc]) that was effective in suppressing the T-cell immune response in Multiple Sclerosis-type disease in mice. The authors suggest that the sugar "corrects a genetic defect that induces cells to attack the body in MS." Very exciting to hear about a metabolic intervention like this that addresses the underlying genetic issue, rather than just blasting the immune system into submission. This kind of approach may have broader implications for the treatment of autoimmune disease. Read the complete article from the Journal of Biological Chemistry here.

Though it was originally published earlier in September, I just found out about this study on the effects of cyclobenzaprine (most common brand name Flexeril) on pain, sleep dysfunction, and depression in fibromyalgia patients. Read the full Journal of Rheumatology article here. I've been extolling the virtues of low-dose tricyclic antidepressants like Flexeril and Elavil (amitriptyline) as an option for chronic pain and sleep issues to anyone who will listen for years now, so I'm happy to see that there's some active research going on. Since these drugs have long since gone generic, and are mostly extremely inexpensive, there isn't always a lot of support for full-scale double-blind trials. I wish more patients would try medications like these before they go on "designer" fibro drugs like Cymbalta and Lyrica, which are a) more expensive; and b) tend to have a significantly higher incidence of side effects, since they are administered in much higher doses. Unfortunately, GPs aren't always aware of these older drugs, and the aggressive marketing of the newer medications makes patients more likely to ask for them. (Irony alert: when I went to check on the link above, there was a huge interactive Lyrica advertisement in the right sidebar.)

And finally, a scientific study confirmed that higher disease activity in rheumatoid arthritis is linked to more severe depression.  Does this actually surprise anyone?