This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.
I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it’s the end of the semester, that I’m busy with teaching and editing and advising. I could say that I’ve been busy preparing for the holidays, that I haven’t been home much. But none of that would be entirely true.
I have a Flannery O’Connor quote in my profile that reads “I write to discover what I know.” And right now? I’m avoiding writing because I’m afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that’s all I’ve been thinking about. I’ve been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I’m not.
As the holidays approach, I can’t help but think about all the things I used to do that I can’t do right now: crochet and knit, hand-make holiday cards, roll out cookies and pie crusts, stand in the kitchen cooking and baking all day, making preserves and candy and sauces to give to friends and family as gifts. I have always shown my love with the work of my hands. I hope that there will be a day in the future when I can do all these things again. But I don’t know that. Because my desire to do those things can only take me as far as my body’s new limitations. And to be truthful I feel physically worse right now than I have in a long time. I’m frustrated, I’m sad, and I’m struggling to be hopeful. I knew all that already, but it still stings when I type it out in the little Blogger “new post” window.
I’m not very good at asking for emotional support when I need it. I don’t like to be seen as needy, or melodramatic, or weak, and so it’s hard for me to reach out. I suppose this blog is my tiny way of reaching out. Extending my life and my empathy in the hope of multiplying the amount of care I am capable of both receiving and giving.
Tomorrow I see a new rheumatologist and continue this convoluted journey of diagnosis and treatment. And I will continue to write about it. Even if my insights about myself and my life sometimes sting. Because ultimately I write for you: young, old, newly diagnosed, undiagnosed, long-diagnosed, wise, innocent, happy, sad, hopeful, disabled, able-bodied, brilliant, contemplative, compassionate you. Thank you for being my reader. You help me to know my self and the world.
No matter what these illnesses take from me, they will not take my ability to think and create in some form. No matter how fast—or slow—I type, it’s still always one letter at a time.
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.
Several days ago, a friend sent me a link to this smart blog post, a response to an article in the Wall Street Journal that suggests most YA novels are “rife with explicit abuse, violence and depravity” that doesn’t reflect the reality of teens’ lives, and that parents, teachers, and librarians should actively seek to prevent teens from reading these books.