Sometimes people are offended that I didn’t tell them when I was sickest, that I kept the fatigue and the pain to myself for months and months. I say, “it was a dark time, I didn’t really tell anyone.” This is not exactly true. But it comes close enough, and I still find it hard to explain what it feels like to be inside a body that is closed in by great pain on all sides. Then, as now, the narrative collapses—there is no form, no genre, no model to give hints about what might happen next, and the energy of accepting the pain, trying to soothe it, or worse, resist it, takes all that is left of the self. The disease attacks the cricoarytenoid joint of the larynx and my voice cracks. I am rendered mute from pain. There is no energy, no voice left for storytelling.
In retrospect, whatever kernel of “truth” emerged from the experience sounds hyperbolic: the stuff of melodrama. Freckles upstaged by a whole galaxy of palpable purpura that climbed like angry spiders up my feet and legs. Fingers, toes, wrists, knees—all swollen into unrecognizability. Vials of bright yellow liquid and boxes of syringes. The bargaining and shaky hands of the first few self-injections. Fatigue that hit me like a linebacker and pinned me to the ground. Waking in the middle of the night to the sensation of a knife slicing through my lower abdomen. The daily lattice of hair in the shower drain and the shock of white where my scalp was exposed.
We have stories about cancer, heroic stories of resistance and remission, and sad, or sometimes uplifting, stories about those who do not make it. We do not have stories about those who face great pain with no identifiable foe, pain that will dog them for the rest of their lives, pain that is the result of the body turning against itself, permanently. I will spend whatever years I have left trying to both accept and outrun this pain, with an arsenal of needles and pills as my only weapons. There is no “lesson” here except that life is random and parts of it are miserable. Some people face the misery earlier, and some later. Sometimes the pain comes from within, and sometimes from without. Whatever mindfulness and compassion I have gained are not a result of the pain—they are my last defense against it. Pain is not a teacher, it is a torturer.
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)
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?
A lot of people assume medical debt is something that happens to “other” (read: poor, unhealthy) people. But pretty much everyone is at risk, including “comfortable” people like me with “good” health insurance. As of January 1, two of the prescription medications that helped put my autoimmune disease into remission have nearly doubled in price (from $75 to $125 and from $135 to $190). I now have to decide if I should devote more of my budget prescriptions each month, if I should reduce my dosage (and run the risk of having symptoms come back), if I should try to find a lower priced medicine (which could mean months of trial and error and a possible flare up), if I should try to apply for patient assistance, or if I should go into debt to pay for my medical expenses.
Infographic courtesy of http://www.nationaldebtrelief.com/
The link above goes to a press release about a study by the Arthritis Research UK Centre for Genetics and Genomics at The University of Manchester. This kind of work is really important, and I suspect we will see major changes in the diagnosis and categorization of autoimmune and autoinflammatory diseases in the next decade. But it brings up some interesting ethical dilemmas. For example, knowing that there’s no cure, would you live your life differently if you were told your had a “RA gene” and that a viral or bacterial infection could bring on full-blown disease?
Abstract and full paper here.
“I tramp a perpetual journey.” ― Walt Whitman, Song of Myself
The expected first entry after a long hiatus from blogging is usually an apology from the author. But you know what? I’m not here to apologize. In the past year, I took a full time administrative job, found a biologic medication that works for me, convinced my insurance company to pay for said biologic, served as a PCORI reviewer (twice), started dancing again, and completed my PhD in American Studies with a dissertation on memory, girlhood, and American literature for children and young adults. I’ll save the full story of how all I accomplished all that, while juggling the limitations and crises that come with chronic illness, for (multiple) upcoming posts.
As someone who is now officially in “remission” (which still boggles my mind), I sometimes forget how sick I was, and for how long. This blog forces me to remember, to keep the memories from fading into hazy approximation. My memories of the years I spent suffering (and the chance that I might suffer that way again) power my commitment to advocacy and scholarship on chronic illness and disability. There’s still so much work to be done, so many conversations to be had: about pain, about access to medications and healthcare, about how chronic illnesses are perceived in contemporary culture, and the impact this has on the lives of those who live with those illnesses and the medical research that might treat, or even cure them. I have a lot more to say, and I’m going to say it here.