That life is complicated is a fact of great analytical importance. Law often seeks to avoid this truth by making up its own breed of narrower, simpler, but hypnotically powerful rhetorical truths. –Patricia Williams, The Alchemy of Race and Rights
Leslie Rott recently published a piece on the accessibility (or lack thereof) of a campus disability services office and the message that sends to students with disabilities. I see situations like this on campuses all the time. Sometimes the only accessible entrance is at the back of a building, or it requires a lengthy walk to get to from the so-called “accessible” parking. It’s depressing and offensive (not to mention often illegal). In many cases, “getting in the door” is a lot more complicated that just stepping (or rolling) over the threshold.
I spend a lot of time thinking and talking about “healthcare access,” but I don’t always think about all the dimensions of what that means. Usually I think about it in terms of insurance coverage: does someone have adequate insurance to cover the doctor visits, medications, and possible surgical procedures. Sometimes I think about geographical or numerical scarcity: for example, there are states in the US without a single pediatric rheumatologist. But there are other, much more insidious barriers to access that are harder to talk about, and that makes it harder to imagine solutions, or even convince people that the barriers exist.
Sometimes the biggest barrier to accessibility is the attitude of the provider, usually a lack of empathy for his or her patients. A few months ago, I wrote about being a medical “Zebra,” and the challenges that come with seeking medical care as a patient with multiple rare (or complicated) diseases–in my case lupus and an unusual form of RA. As I noted then, some of the biggest challenges for people with chronic illnesses stem not just from symptoms and coordination of treatment , but from our doctors. Striking a balance between being an engaged patient and a “compliant” patient is frequently hard to negotiate, and doctors are rarely interested in having their opinions questioned or refuted (even when their opinions fly in the face of evidence-based medicine), especially, in my experience, if the patient is a woman. I was reminded of this again when I read (and raged) about one patient’s experience trying to seek care from a pain management clinic over at “Never that Easy.” Very few chronically ill patients actually want to take high powered pain killers, and yet they are treated like addicts and criminals simply for seeking pain management care. Often patients are required to produce a urine sample–in front of a security guard or police officer–just to receive care at a pain clinic, regardless of whether or not they are seeking opiate medications for pain control. This is an embarrassing and dehumanizing way to restrict access to necessary medical care.
Sometimes provider attitudes come out in other, more subtle ways. For example, a few years ago my rheumatologist suggested I seek a second opinion from a different gastroenterologist than the one I normally see. While I was filling out the intake paperwork, I noticed that there was a whole section that seemed to be about recreational drug use. Except in this case, it wasn’t just about drugs; the questions grouped together recreational drug use, prostitution, and homosexuality. While I understand how the behaviors commonly associated with each of these can put people at high risk for certain diseases, and why they might be grouped together for public health research or interventions, I was shocked and appalled to see that grouping on a medical intake form. As a result, I omitted the fact that I had been in a long-term relationship with a same-sex partner because I didn’t want to have that conversation with that doctor, fearing that he would condemn my “lifestyle,” refuse me care, or ignore and belittle my symptoms because of who I was and how I identified. Perhaps it was just a generic form, and neither he nor his staff had ever thought about it’s impact on LGBT patients. I was not particularly interested in finding out the hard way and throwing myself in the path of discrimination.
A close friend of mine had a similar experience today. He has overlapping autoimmune diseases that require the care of an endocrinologist. He recently moved and is now seeking a new doctor. He also happens to be transgender and he is taking hormone therapy. For reasons that are not entirely clear, he has been refused care by the endocrinologist in his insurance network because of his gender status. Is it because his case is “complicated” and the endocrinologist doesn’t feel comfortable prescribing medication for someone who is taking hormones? Maybe. But providers don’t usually deny care to women taking birth control. Is it feat of litigation if there’s a drug interaction? Maybe. But I suspect it’s much more likely that the initial concern about a complicated patient with multiple condition is amplified by the provider and his/her staff’s discomfort over having a trans person in their practice. Did I mention that my friend needs to see a doctor in order to be cleared to get his drivers license in his new home state? If that isn’t about accessibility, I don’t know what is.
The next time I speak about healthcare access with someone–whether that person is a friend, a colleague, or an elected official–I’m going to think hard about what I mean, and about what access means in the context of how providers interact with their patients. Because access isn’t just about getting rid of specialty tiers and reducing co-insurance. It’s about finding ways to identify and fix problems like brutal and embarrassing testing, physically inaccessible spaces, and outright discrimination that’s rationalized away by the claim that a patient is just “too complicated.”
We are all complicated, Zebras or not. And we all deserve appropriate, accessible medical care. Never forget that the goal of healthcare, and healthcare providers, is not necessarily to cure, but to allow all of us to flourish.
9 January 2012: This blog post has been included in RA Warrior’s blog carnival on pain scales. While my entry is a bit on the irreverent side, check out some of the other entries for more thoughtful perspectives on tracking, quantifying, and communicating pain. Thanks for including my post Kelly!
I’ve been thinking a lot lately about how easy it is for a continuous level of pain to become the “new normal”— like when your pain is at a “5” consistently, that becomes your baseline and you forget what a “0” or a “1” felt like before you were in pain all the time.
For the last few years, my feet have been the bellwether of my arthritis. When I’m feeling good, my feet feel pretty good. When a flare is bearing down on me, my feet are the first to respond. Last week, I tried (and failed) to put on a cute pair of sandals to go out and realized I’d gone a month without wearing heels.
Since the standard pain chart is woefully inadequate (as outlined hilariously over at Hyperbole and a Half), I decided to make one of my own: a shoe shorthand for my pain levels. Note that these are shoes for my professional life, not necessarily what I’d be wearing if my day involved reading, writing, and picking up some groceries (that’s what slipper socks and Uggs are for, right?). So if you catch me at work in a pair of sneakers, it might not be the best time to ask for that extra favor…
Pain Level: 0
Pain? What Pain? I feel awesome today!
Pain Level: 4
You’ve got to be kidding me if you think I’m putting these swollen toes into a pair of heels.
Pain Level: 8
Don’t even ask, or I might have to tell you about how it feels like someone
has shattered all the bones in my feet with a hammer. Literally.
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.
I just finished reading a great piece over at IDIOM about teen lesbian novels. While the excerpt from They’ll Never Make a Movie Starring Me offers a ridiculous yet classic example of the teenage-girl-protagonist “voice,” I was really struck by the author’s analysis in the final paragraph:
The more refined these coming-out stories are as instructional tools, the less literary they become, and the less true. It is second nature to judge their politics; it is the responsibility of being an “actual lesbian.” But the best thing that could happen to the young-adult literary world would be for somebody to slip up and say what they really feel.
I’ve dealt with several of the novels she mentions in my academic work, and I always struggle to come to terms with the ways in which the books manage to be progressive and yet deeply conservative at the same time. Describing the work of Roal Dahl, children’s literature scholar Peter Hollindale suggests “subversive narratives exist within a conformist metanarrative” and I tend to think that’s an apt description for most YA fiction.
Like the author, I also *didn’t* read most of these texts when I was a teenager. I was reading YA fiction in fifth, sixth, and maybe seventh grade, a period in my life marked by, you guessed it, intense friendships with other girls. But I also had a number of close guy friends and about 0 interest in sex. With anyone. So why would I have read books where the characters were grappling with their sexual identity?
Though my obsession with certain older girls might have been some sort of warning sign, by the time I had any inkling of the fact that girls could even be attracted to other girls, *like that*, I was fifteen and reading Jeanette Winterson alongside Poe, Dickinson, and the Brontes. (Plus I find it rather hard to picture my nerdy, vintage-clothes-wearing, goth self wandering over to the YA section of the public library to investigate the–I assume–meager selection of gay-themed novels in my tiny, gossipy, hometown.) It wasn’t until later, long after I’d come to a sense of my own identity, that I discovered a trove of “gay” YA “problem novels” that could have been teaching me how not to be a queer teenager all along.
I don’t know if it’s good or bad that I didn’t read these books as a teen. Though when I get accused of trying to reenact or recreate some sort of adolescent reading experience of my own (a charge I’ve heard from several academics) I just laugh and say, “But I didn’t read books like that when I was a teenager.” So now I have to wonder, who exactly is reading these books? And are any of these “actual readers” teenagers?
There’s been lots of comment drama at the Hairpin today in response to this article on breast reduction surgery. I haven’t been in the position of the author, but I’m kind of tired of all the supposedly “feminist” hand-wringing over body modifications. I’m lucky to be comfortable with what the genetic lottery gave me (plus my ink and a couple piercings), but a lot of people don’t feel that way. (I’ll admit that in the past I’ve made a few less-than-generous comments about other people’s breast augmentations. Sorry.) But it isn’t just “blah blah the media is evil,” “blah blah ‘normal’ is bad.” The complexities of identity deserve more than that. And all this rhetoric of “accept yourself as you are” (aka “natural is better,” whateverthefuck that means) so easily slides into totally unreflexive transphobia. I think that’s the part that’s really heartbreaking to me. Can’t we just come to terms with the fact that some people are utterly (and often miserably) alienated from the bodies they were born into, whether that’s something as simple (ha!) as breasts, or as complex as gender?
P.S. You can have my smoking hot body and perky boobs but you get lupus to go with it. Deal?