It’s been nearly four months since I last blogged. I suppose that means I’ve been on a bit of a hiatus, partly intentional, partly unintentional. My personal life imploded in April, and while I won’t go into it here, I will say that some of the issues have been resolved, and some haven’t. I am trying to be at peace with uncertainty.
The sense of uncertainty extends to my health as well. I had a good five month stretch of prednisone-enabled denial, where I was nearly symptom free. It was lovely, but obviously too good to be true, and about a month ago my symptoms started to emerge again. My rheumy had hoped that a few months of continuous steroids would allow the additional Plaquenil/HCQ to take effect, and then we could taper down again. Unfortunately, it hasn’t quite worked like that, and I find myself with considerable pain and fatigue, despite being on the highest dose of HCQ for my weight, and a maintenance dose of steroids plus massive amounts of ibuprofen (and everything else…). So we’re onto the next DMARD, Arava. Or trying to be. My insurance has denied coverage for it, even in generic form, so I’ve spent the last three weeks battling that and also applying for medication assistance through Rx Outreach.
Back in June I gave a talk on children’s literature and illness narratives at the Society for Disability Studies conference in Denver. It was my first year attending, and I have to say that the conference itself was an extraordinary and often joyful experience, though not without some feelings of anger and frustration. I think in some ways it is even harder to have an invisible illness or disability among people with visible and/or mobility-related disabilities. The scrutiny is much higher, and some people can be much quicker to judge or assume that one is able-bodied. I felt significant pressure to “explain myself” and my presence at the conference. I’ll have to write more about the experience in another post.
First and foremost, I started this blog as a form of therapy: a place where I could voice my hopes and fears, and work through some of my frustrations. Last winter, when I was so sick, I felt a sense of hopelessness creeping in, and I needed to do something about it. This blog was my way of taking back a little control, and re-narrating my life in a way that made sense. I began to piece together a new sense of self that had room for the woman I know as “Megan,” and the new identities and labels that were crowding her out: patient, chronically ill, lupus, RA, depressed, unhappy.
Somewhere along the way, I started “meeting” other people with chronic illnesses, through their blogs and twitter, and suddenly I had a readership (perhaps mostly fictional, but a few hardy souls kept reading) and a sense of connection. The load seemed somehow easier to bear. And some of the labels started to seem less and less a part of me, while the others felt more manageable. As I continue to blog, I find that it’s the chance to engage and connect that keeps me coming back, as well as the knowledge that there may be someone out there like me, feeling scared and alone, who will read my words and realize that she’s not the only one, that her pain and fear are real, but that there is life with chronic illness.
When I was younger, I made several blogging attempts and failed each time. I had the desire to write, but I didn’t know what to write about. And so my blogs languished in corners of the internet, mildly solipsistic and eventually abandoned. This little experiment–Objects in Mirror are Closer than They Appear—is now just over a year old. I won’t claim it doesn’t have its solipsistic moments, I am human after all, but I feel like I finally have something to say and the place to say it. Plenty of days I feel like I have more to say than I will ever be able to contain in these little snippets of my perceptions, thoughts, and feelings.
So thank you for reading, whomever you are, and know that I write for you, even if I don’t know you yet.
This post is part of the WEGO Health Activist Writer’s Month Challenge (HAWMC). During the month of April I will be writing a daily blog post related to health and health activism, often inspired by or in response to a prompt. For more information on HAWMC, visit the WEGO Health blog.
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.
You can’t connect the dots looking forward; only by looking back. You have to trust that the dots will connect in your future. —Steve Jobs*
When I tell people about my lupus diagnosis, I often find myself saying the word “upgraded,” as though I had been in economy class and got bumped up into first. And it always makes me laugh with more than a little black humor, because you have to be pretty sick to be excited about an “upgrade” to SLE, or any other autoimmune illness.
But the truth is that it was an enormous relief to finally have a diagnosis that included a protocol for treatment. For more than ten years I bounced from doctor to doctor, GP to rheumatologist to psychiatrist to orthopedist and back, and they all said “Well, something is wrong with you, we just don’t know what yet.” (In the meantime, I had some great therapists who helped me work through my anger and frustration and sadness, so don’t think I have anything but respect for good psychotherapy!)
As a child, it started with joint pain and inflammation, particularly in my knees and ankles. Despite my frequent fevers and general malaise, I went undiagnosed, though not untreated. Because my symptoms were systemic but primarily joint-related, I was repeatedly tested for RF, mono, and lyme disease. Over and over again. I’m old enough that at the time the diagnostic criteria for Juvenile Rheumatoid Arthritis were very narrow and required a positive rheumatoid factor (mine has always been negative)— Juvenile Idiopathic Arthritis and Juvenile Chronic Arthritis did not yet exist as possible diagnoses, and despite vascular symptoms, no one tested me for ANA until I was in my late 20s. So they pumped me full of aspirin, and I limped my way through adolescence. Periodically, as is typical in the cycle of flare and remission, my symptoms would magically lift and I would think that I had finally overcome my mystery illness, only to have my symptoms reappear weeks or months later. To call the experience discouraging is a ridiculous understatement. It was soul-crushing.
As patients, I think it’s easy for us to forget that the diseases we are diagnosed with (or not diagnosed with) are man-made entities. I don’t mean man-made in the sense of some sort of crazy conspiracy theory that involves underground bunkers or biological warfare, I simply mean that these diseases— lupus, RA, fibro, scleroderma, and many others—are relatively recent inventions in terms of human experience. These diseases have not been waiting for us since time immemorial, unchanged and universal. They each have their own history, generally one which involves an initial discovery followed by a period where a large number of people try to come to a consensus over sets of common symptoms and behaviors and the best course of action for treating those symptoms. And these sets of symptoms, diagnostic markers, and treatments change over time and we continue to learn about the mysterious (and pretty amazing) workings of the human body. The disease entities are constructed by the researchers, doctors, and patients who interact to try to understand the working of certain bodies during a certain period of time.
As an example of how the process of diagnosis can change dramatically, rheumatoid factor used to be one of the primary diagnostic criteria for RA. It is only within the last five to ten years that doctors have discovered that anti-CCP is a much more useful test for diagnosing and treating RA, particularly in its early stages. And this was not officially written into the American College of Rheumatology diagnostic criteria until 2010! Unfortunately, even as medical researchers begin to understand the mechanisms of autoimmune disease better, and treat the underlying causes—for example with biologics that target specific immune cells—rheumatic and connective tissue diseases bring with them a whole host of stereotypes and negative connotations.
I’ll save my diatribe on women and autoimmune illness for a later blog post (remind me to tell the story about the orthopedist who told me I needed more brisk walks…), but I just want to end by saying that I think it’s important to remember that you are not your illness. Neither you nor the illness you have been diagnosed with is a solid, frozen, unchanging entity. Flares will come and go, symptoms will come and go. Your own self identity will change during the course of your life. Your sense of self and your identity have been shaped by your past experiences and the culture you were born into and currently live in. In much the same way, the illness you have been diagnosed with is shaped by the cultural and scientific world(s) in which you live. The very definition of your disease may change in your lifetime. Don’t let it rule you—acknowledge it, seek to treat it in ways that allow you to live a richer life, but remember that you are an active participant in your own becoming.
*Quote courtesy ZenMoments‘ Twitter feed.