Talking about “Illness” at an American University

About a week and a half ago, I attended an event entitled “The Chronic Question: Writing About Illness.” Obviously I didn’t want to copy their title for my own post; besides, the Q&A ended up revealing more about how privileged folks at an American college like to talk about illness as opposed to how one writes effectively about the subject. It was a long discussion, so here I just focus on the themes that interested me the most.

The four authors who participated in the Q&A are: Jenni Propoky (chronicbabe.com), Laurie Edwards (In the Kingdom of the Sick: A Social History of Chronic Illness in America), S.L. Wisenberg (The Adventures of Cancer Bitch), and Paula Kamen (All in My Head).

Writing about illness as a remedy for loneliness

By far the most prevalent sentiment that the authors and bloggers expressed was that they began writing in an attempt to forge some sort of abstract connection to humanity. Paradoxically, perhaps, this meant that most of them started with the Internet, a refuge for all sort of self-identified “lost souls” who pour their thoughts into an abyss in the hopes that an anonymous stranger will read and relate to them (why yes, there was some meta-analysis there–good catch!). As Jenni stated, “I felt very alone, desperately alone,” when first diagnosed; Laurie said that she needed to “connect” with people who had her same disease; and Paula lamented “I thought I was the only person in the world with headaches everyday.”

It’s really strange, isn’t it, that the Internet—which is often blamed for fostering social disorders in children and leading people to “disconnect” from everyday life—is, in this instance, lauded for its connective abilities.  I mean, that is what its name actually suggests, but at the same time, it’s an anonymous sort of recognition, so I don’t know how therapeutic it really is.

Your illness becomes your identity

Each woman discussed illness with respect to her specific diagnosis. Jenni, for example, wanted to find other people with fibromyalgia, while Paula, who suffered from chronic headaches, infused her writing with concern over the lack of federal funding for migraines.

I wonder where this push to discover others “just like us” comes from. It’s difficult to imagine a different way of rallying around illness when the American health care system is so focused on giving each patient a diagnosis.  Laurie admitted, for instance, that in her encounters with the medical system she had been subjected to “A lot of myopic thinking and specialized care.”

I had hoped that the panelists would focus less on the specifics of their disease, and instead talk about issues surrounding chronic illness and health care in the United States more generally. I understand, as Jenni said, that “People really need to hear that they’re not alone.” But what good is writing about illness if you only focus on, for example, the extremely rare type of cancer with which you have been diagnosed, and attempt to create a community surrounding only that type of cancer? It excludes at the same time that it includes.

Critique doctors, but assume everyone has access to health care

This was the aspect of the talk that probably frustrated me the most. While there was certainly a robust discussion about how each woman had been “failed” by the medical system, no one asked if any of the women had lingering financial issues or outstanding medical bills. Access to health care was assumed.

Laurie complained, for example, that “The system didn’t have a place for me,” and expressed her desire to find a diagnosis that “matched my experiences.” (One wonders how this compares to her complaint that healthcare is too specialized—how can a health care system be both specialized and generalized at the same time?) Paula recounted how older male doctors often viewed her as a “threat,” and discussed her preference for female physicians whose “egos weren’t tied to my getting cured.” This is an interesting observation, but I wonder if the patient’s desire for a clear-cut diagnosis doesn’t, in turn, exacerbate a doctor’s frustration with a given patient and that doctor’s sense of failure when a diagnosis cannot be produced.

In sum…

Basically, all of this was summed up by someone in the audience who bluntly stated: “That’s the trick, to somehow find a doctor who will work for you.”

I’m not saying that personalized health care isn’t important—it is. But based on the classes (ok, class) that I’ve taken on the 1970s feminist healthcare movement, it seems to me that the same weakness that undermined activists in the 70s appears to be the focus of contemporary discussions about illness. Namely, privileged feminists in the 1970s often focused on a woman’s interaction with her doctor, and sought to subvert that particular unequal power dynamic. But many of them (I’m painting in broad strokes here) ignored the question of access; i.e., can every woman actually get to a doctor when she needs to?

It’s telling when you can have an hour-long discussion about chronic illness and bemoan the U.S. health care system and yet never once bring up Obamacare or the extortionate insurance prices that many, if not all, of these women probably had to pay to treat their rare and/or hard-to-solve diseases. But I guess that’s what happens when you go to an event at a private university with a multi-billion endowment. To the credit of the panelists, I think they would have been comfortable discussing some of these issues had the audience not been so bent on talking about how to find a good doctor.

Regardless, it was an interesting event to attend, and if you haven’t seen Sandi Wisenberg’s blog, here’s a sneak peek. She’s snarky about the whole pink ribbon thing, which I definitely appreciate.

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