On Being a Zebra (or why Occam’s razor doesn’t always work)
Among competing hypotheses, the one with the fewest assumptions should be selected. (Occam’s razor) “Whenever an affirmative proposition is apt to be verified for actually existing things, if two things, howsoever they are present according to arrangement and duration, cannot suffice for the verification of the proposition while another thing is lacking, then one must posit that other thing.” (Chatton’s “anti-razor”) “Patients can have as many diseases as they damn well please.” (Harrum’s Dictum)
This is Zoe. She’s a rare “Golden Zebra.”
Medicine has its own little collection of aphorisms–pithy sayings that often get trotted out to try to explain or discount patient behavior. These aren’t limited to variations on Occam’s razor, but they often work to suggest that the simplest explanation is best. On more than one occasion, I have been subjected to a paraphrase of Dr. Theodore Woodward’s directive: “When you hear hoofbeats, think of horses not zebras.” This is generally taken to mean that the physician should consider the most common diagnosis first, rather than an exotic one. I suppose this is good advice for the medical intern, or the harried ER doctor, but what happens when it is a zebra, and not a horse? Or two zebras? Or a herd full of zebras? Or an albino zebra?
All of this is on my mind today because I saw my rheumatologist earlier this morning to discuss my unsuccessful attempts at tapering off of prednisone. I had hoped Kineret would be my magic bullet– and it has been for my inflammatory arthritis (which meets the diagnostic criteria for RA, but is likely a variation of TRAPS and/or AOSD). However, as it turns out, lupus is still lurking in the shadows, and was all too happy to make an appearance once the prednisone shield came down. So back up the prednisone dosage goes.
At this point, I wish I were better at grappling with uncertainty. If nothing else, chronic illness forces you to relinquish the illusion that having a diagnosis is an end point. It’s really just the beginning, and always subject to revision. As my doctor said today, my symptoms could be entirely different in five years. So I do my best to focus on now, and on what will allow me to have the best quality of life–to flourish–now. If it means prednisone today, it means prednisone today. Maybe later it will mean Imuran, CellCept, or Benlysta. Maybe research into autoimmune and autoinflammatory diseases will reveal new causes and new treatments and I will end up with an entirely different diagnosis altogether.
It’s so easy to be discouraged, but then I think back to how miserable I felt when I was first diagnosed, then when I was on methotrexate and Arava with the added trauma of losing half my hair (and sometimes what felt like half my mind), and it’s easier to see how far I’ve come. A few milligrams of prednisone isn’t the end of the world. Diagnoses are a means to an end. It doesn’t “please” me to have more than one rare disease, but if I’m a zebra, I’m a zebra. I didn’t choose to be the exotic one, but really, who would choose to be a horse when you could be a zebra instead?
Changing Aspirations, Fitness, and RA/Lupus Fatigue
This morning, Gretchen Rubin, author of The Happiness Project, posted the following question on her Facebook feed:
Happiness Question: Do you consider exercise to be a treat or a chore?
While I might have considered exercise a chore in my life before my Lupus/RA diagnosis, it is now definitely a treat. While once-upon-a-time my aspirational images came from glossy fashion magazines, I now gaze longingly at the running, stretching, dancing, and climbing women in magazines like Self and Women’s Fitness (the same smiling women who can be out in the sun without a hat, long pants, and long sleeves). I flip through the Athleta catalogue, mourning the days when I had enough energy to run 12 miles and go to three yoga or dance classes in a week– which is to say, meet the guidelines for 30-60 minutes of exercise per day. I have the schedule for my local dance studio open in my browser, just on the off chance I feel up to a yoga or ballet class (this actually happens about once every six months.). I’m lucky that I haven’t gained more than a couple of pounds on prednisone, but that doesn’t stop me from grieving from the active, capable body I used to have.
Those of you who have been following this blog for a while may remember my cranky response to a small study on exercise and RA patients that received a lot of media attention last winter. The conclusions of the study authors seemed to suggest that RA patients as a whole were less active than the general population, and that this was the result of their attitudes and beliefs about the benefits of exercise, not their pain level or ability to exercise. The mainstream media took these conclusions and ran with them, trumpeting headlines like “2 in 5 RA Patients Sedentary.” This is, in my opinion, a gross oversimplification of some complex findings. One, RA patients, when grouped by age, are only slightly less active than the general population. Two, the findings in the study are skewed by a large number of older patients, a population that a) tends to be less active in general; and b) includes many individuals who received an RA diagnosis during the 1980s (or earlier), when the general consensus in the medical community was that exercise was more harmful than beneficial to joints affected by RA. So rather than trying to shame all RA patients into more exercise, which downplays the fact the many RA patients continue to deal with pain and fatigue, even once they reach so-called “clinical remission,” I think the study suggests that older RA patients need outreach to encourage them to be more active. The rest of us who want to exercise and can’t? I don’t know what the solution is, except better treatment options and access to those treatments, less reliance on broad-spectrum immunosupressive drugs like methotrexate that sap energy, and more access to gentle exercise modalities like swimming and tai chi.
I’ve always been an active person, if not an intensely athletic one. I played soccer as a child until I was sidelined by arthritis in my ankles and knees in my teens. I continued to dance, on and off, into my late 20s, and I took up running and hot yoga during a particularly energetic period in my mid-20s. But now fitting in exercise requires a complex balancing of my time and energy. In order to find the energy to spend 30 minutes on the elliptical machine or in the pool at the gym, or attend a gentle yoga class, I have to take into consideration that it will probably sap the rest of my physical energy for the day. I weigh questions like “If I go to the gym, will I have the energy to prepare myself food, or catch up on housework when I get home?” “Will the benefits outweigh the inevitable pain?” Most days the answer is no, and I must prioritize my basic needs above exercise, which has become a luxury. (I have begun to count “doing laundry” as a form of exercise—there are two flights of stairs involved). While I have had peaks and valleys of energy during the past two years, my average leans more toward “fatigue”. I hope some day I will find a treatment that allows me to return to the realm of the athletic. In the meantime I eat well, but I wear my yoga pants at home and gaze longingly at the Athleta catalogue from the couch.
How do you stay fit with chronic illness?
Super-crip Narratives and the Burden of Disability
In the academic discipline of Disability Studies, one of the topics in discussions of disability narratives and the social construction is disability and the so-called “super-crip narrative” or super-crip stereotype. The super-crip narrative follows a familiar pattern of documenting the experience of the individual who achieves great things in spite of a disabling condition. Usually great emphasis is placed on their “positive outlook” or optimism and sold to the public as a “feel good” story. See, for example, much of the recent coverage of Olympic sprinter Oscar Pistorius, known for his high tech carbon fiber prosthetic legs and childhood amputations as much as his running times. Other examples include historical figures like Helen Keller and FDR, or, more recently, Christopher Reeve.
One of the primary critiques of the super-crip narrative is that it emphasizes the idea that people with disabilities should be smiling, good-natured, and docile about their experiences (aka “The Good Cripple”), even when those experiences are painful, frustrating, and the source of a great deal of unhappiness. These stories tend to reinforce the expectation that people with disabilities should be grateful for any assistance they receive, no matter how limited or patronizing. They also put undue pressure on people with disabilities to “overcome” their disability— as though living with a disability weren’t difficult enough!— or, as in the case of a condition like autism, they suggest that disability is always paired with an extraordinary skill or talent. The Supercrip Narrative can also stand in the way of accommodations for people with disabilities, implying that “overcoming” is a matter of will and that accommodations are unnecessary, or that one should be nothing but grateful for any accommodation, no matter how small. Basically, the super-crip narrative says, “if you can’t overcome your disability, you’re not trying hard enough.”
While I am opposed to the sort of patronizing narrative designed to be an inspirational story that makes able-bodied people feel better about themselves, I still feel myself drawn to stories that highlight the achievements of people with disabilities and chronic illnesses, whether these stories are of “overcoming” or simply being. For example, I was interested to find out that Shannon Boxx, one of the members of the US Women’s Soccer Team, has lupus and Sjogren’s disease. Her story—both her bravery at revealing her diagnosis, and her commitment to continuing her soccer training despite the disease— is inspiring to me, as a fellow lupus patient.
I know I speak for many of us diagnosed with disabling chronic illnesses when I say that diagnosis, treatment, and the day-to-day experience can feel like the slow dismantling of your hopes, dreams, and aspirations. Suddenly things that seemed easy (or that required little thought or effort) become nearly impossible. On a good day you may find yourself making choices between, say, exercising, doing chores, or seeing friends. On a bad day you have to decide if you have the energy to take a shower or even get out of bed. Often pride gets in the way of revealing how terrible you feel (I know I would be lost without my DermaBlend concealer!). On those hard-to-get-out-of-bed days, reading about someone like Shannon Boxx helps me to feel something other than hopeless resignation that I will never achieve the things that I have set out to achieve in my life.
So how do we make room for stories about illness and disability that offer hope to those of us with similar experiences without enforcing the expectation that we be happy, compliant, inspirational figures to alleviate the guilt of those who are not (yet) ill or disabled? Certainly the move away from terms like ‘handicap” and “cripple” and toward people-first language has helped. But there’s still a great deal of misunderstanding and animosity toward people with chronic illnesses and disabilities—no need to look any further than the politic discourse in the US surrounding access to healthcare.
I think part of the responsibility is for those of us who struggle with disabilities and/or chronic conditions to document our experience in an honest and straightforward way, and to educate others about the destructive power of negative stereotypes. Stereotypes about psychosomatic and psychiatric disorders and “hysterical” women continue to delay the diagnosis and treatment of autoimmune diseases in both men and women (it took seven years from the onset of her illness for Shannon Boxx to receive her diagnosis). Well-meaning friends, family, and even doctors suggest things like brisk walks, therapy, and prayer. This is unacceptable.
The average person encounters disappointment and unhappiness in his or her life, and no one expects that person to remain smiling, grateful, or “inspirational” even in the face of great hardship and suffering. Why should the experiences of people with disabilities and chronic illnesses be any different?
I write about my health because…
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.
Message in a Bottle
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.
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.