The first version of the prompt for the opening day of Health Writer’s Month Challenge asked me to imagine constructing a time capsule related to my health condition. The second version asked me to consider a time capsule that tells my story. So I’m going to do a little of both.
Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?
Hmm. 2112. One hundred years is a long way off, and who knows what sort of technology will be available by then. I think the thing I want to capture in my time capsule is the excitement of the scientific discoveries that have been made in the past three decades, but also that there is still a great deal about illness that we do not understand, particularly autoimmune and rheumatological diseases. I would include articles about the development and release of the lupus drug Benlysta, as well as some materials to provide background on the issues of race, class, and access to treatment that Benlysta (and similar biological medications) raises in contemporary US culture.
Historians of medicine often puzzle over the way certain diseases were recognized (or not recognized) and treated (or not treated) in the past. I want to provide an archive to help explain how we early-twenty-first century people conceptualize rheumatoid arthritis and lupus, both in terms of the diagnosis and treatment of individual people, as well as how patients are treated as a group. I would include my own writing about my narrative of diagnosis, and my ongoing struggles during treatment, as well as images and stories of myself and others. I would primarily include printed materials (on acid-free archival paper, ‘natch) and I would also include video footage, though with the understanding that there might not be DVD players (or that the disc itself might be unreadable) in the future.
In the documents about my own experience, I also want to describe the complicated mass of phenomena that come together to form the medicalized body of a woman, including the history of hysteria, conversion disorder(s), and somaticisation as an issue of women’s physical and mental health; the absence of women from many clinical trials, particularly in the mid-20th century; and the political conflicts over such disparate issues as access to birth control, privatized health insurance, and medicare repayment (which affects access to rheumatological care). I want to provide a snapshot of what it means to be a woman, to be American, to be chronically ill, and to be disabled at this moment in history.
I want my time capsule to capture the struggles and the hopes of patients with rheumatoid disease and lupus. I hope that in 100 years these diseases will be cured—by advances in genetics and in the technology that has led to the development of biologic medications. If this is the case, I want my capsule to provide a window in to the experiences of individuals whose lives were ravaged by disease, and yet lived productive and even joyful lives despite their illnesses.
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 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.
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:
You’re probably looking at the title of this note and thinking “World Arthritis Day? What does that have to do with me?” Well, a lot, actually. Did you know that 1 in 5 Americans has been diagnosed with arthritis (~50 million) and public health experts expect this number to continue to rise as the population ages? (1) Many people think of arthritis as a disease of the elderly, but that’s only part of the story. Nearly two-thirds of arthritis diagnoses are in people under the age of 65, including children, teens, and young adults (1). Likely several people close to you have been affected by arthritis, though you may not know it because the symptoms are often invisible.
“Arthritis” is an umbrella term that covers over 100 different diseases and conditions. The most common form of arthritis is Osteoarthritis (OA), the kind of wear-and-tear, comes-with-old-age arthritis that is limited to the joints, is generally diagnosed in older adults, and can often be managed with exercise, weight loss, and over-the-counter medication. However, among those 100 kinds of arthritis, there are roughly 30 forms of autoimmune arthritis (also sometimes referred to as “inflammatory rheumatic diseases” or “inflammatory arthritis”) that can be life-threatening and affect not only the joints, but organ systems throughout the body, for example the heart, brain, eyes, lungs, GI tract, skin, and vascular system. In these diseases, the body turns against itself, deploying the immune system in the destruction of its own joint linings, organs, and connective tissues. Some common types include rheumatoid arthritis (RA), lupus (SLE), scleroderma, juvenile idiopathic arthritis, and Sjogren’s syndrome (recently brought to national attention by tennis star Serena Williams (2)). It is not uncommon for an individual to be diagnosed with multiple or overlapping autoimmune conditions, or to have several years pass between the onset of symptoms and a final diagnosis.
Currently, over 7 million Americans suffer from autoimmune arthritis and inflammatory rheumatic diseases, with women and minorities disproportionately affected. (The total for all autoimmune diseases, not just those under the arthritis umbrella, is estimated at about 24 million). These diseases are frequently diagnosed between the ages of 15 and 50, often striking individuals as they enter college, join the workforce, and/or try to start a family.
What exactly does this “7 million” mean for you? According to the Mayo Clinic, if you are a woman, you have a 1-in-12 chance (8.4%) of developing an inflammatory autoimmune rheumatic disease in your lifetime (3). For men, that number drops to a still-surprising 1-in-20 (2). By comparison, a woman has a 1-in-8 (12.15%) chance of being diagnosed with breast cancer in her lifetime, but only a 1-in-36 (2.81%) chance of dying from the disease (4). Yet the funding disparities between arthritis and other diseases are depressingly large. (5) In addition, it’s difficult to determine specific risk factors or causes for these diseases; while there seems to be a genetic predisposition in some patients, no one knows exactly what causes the onset of autoimmune arthritis.
Autoimmune arthritis and cancer are treated with many of the same drugs, including chemotherapy and newer biologic medications used to suppress parts of the immune system– you may have seen advertisements for these on TV, like the one for Enbrel featuring golfer Phil Mickelson. These drugs are expensive, powerful, and dangerous, but for those people with autoimmune arthritis who can both tolerate and afford them, the benefits generally outweigh the risks. Unlike the majority of cancer survivors, however, autoimmune arthritis patients must remain on a low dose of these drugs for the rest of their lives in order to prevent crippling disability and organ damage because there is no cure. Even with well-controlled symptoms, the life expectancy of a person with a disease like rheumatoid arthritis can be shortened by 3 to 15 years (5,6).
There are also a bunch of other unpleasant details that go along with autoimmune arthritis. Apart from excruciating pain, the symptom common to nearly all forms of autoimmune inflammatory arthritis is fatigue. And not just “oh, I’m a little tired today” fatigue, but the kind of bone-tired fatigue that accompanies a bad case of the flu. This is one of the hardest symptoms for patients and their doctors to manage, even after inflammation and pain have been reduced. In addition, medications used to suppress the immune system cause all kinds of unwanted side effects, which can include weight gain, weight loss, hair loss, cognitive impairment (aka “brain fog”), sun sensitivity, insomnia, increased risk of infection, increased risk of certain kinds of cancer, and more. On top of all of this, grappling with the long term effects of a chronic, painful, incurable, and often invisible disease can be downright depressing, even for the most optimistic person.
So the next time someone mentions that he or she has arthritis, pause a second before you say something like:
Because in many cases the answer will be “no”: No, I’m not too young. No, your grandma probably doesn’t have what I have. No, tylenol/glucosamine/some extreme diet/internet-cure-of-the-week won’t help. Yes, exercise is good, but only low impact, and only when inflammation is under control. Chances are, however, polite questions, or a simple “Is there anything I can do?” will be much more graciously received.
For more information, or to find out how you can get involved– even just by emailing your elected officials– visit the Arthritis Foundation, especially the section on advocacy, or the World Arthritis Day website. Or you can just ask me. Knowing is half the battle, right? Thanks for reading.
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?