When “Self-help” Isn’t So Helpful
“When you are ill or disabled, do not feel that you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either.” –Eckhart Tolle, The Power of Now (218)
For the past few weeks I’ve been reading bits and pieces of Eckhart Tolle’s The Power of Now. I appreciate the ways in which he brings together anecdotes and parables from various religious and philosophical traditions in order to illustrate his arguments about surrender and presence. I suspect this is why his books have been so popular, and why he received the ringing endorsement of someone like Oprah. For the most part, he also manages to stay away from the sort of woo-woo, new age-y stuff that reaks of pseudoscience.
I will be the first person to agree that pain and suffering are separate but related phenomena, and that the stories we tell ourselves about pain (physical, mental, or emotional) amplify our pain and lead to suffering. I also recognize that one of the only ways to short circuit this process of amplification is to try to be mindfully present at all times. For me, the best way to manage the physical pain of autoimmune disease is by staying fully present with that pain as it is– not the story of how the pain is like or unlike other pain, not the story of how the pain is never going to stop, or is only going to get worse, or how my life would be so much better without it, and definitely not the story of how the pain is the single most defining characteristic of my life. It’s taken me a long time to get to that point, to accept that the things my ego wants (“identify with the pain!” “be a victim!”) work against my chances for finding a lasting sense of peace and contentment.
So why am I left with a bad taste lingering in my mouth?
First, it’s all well and good to stop identifying with pain, but what happens when that pain is caused by circumstances that could be changed, either right now or in order to benefit someone else in the future? I think about the battles those of us involved in patient advocacy fight every day: better access to healthcare and prescription drugs, more research on rare and chronic diseases, appropriate compensation and benefits for doctors who go into unpopular specialties like rheumatology. Individually, we do not have the power to make the systemic changes that would improve the lives of patients. But collectively, we can fight those battles by telling our stories to people who do have the power to make changes: elected officials, scientists, researchers, insurance companies, and clinicians. How do we tell the story of our pain–and yes, suffering–without identifying with it? How do we use the power of our individual and collective narratives without become overwhelmed by them? Where is the self-help book to teach me about that?
More importantly, whether it’s Tolle, or someone like Lynn Grabhorn, many of the teachings that seek to lead people away from suffering fail to take into account the very real physical pain of chronic illness. Despite statements like the quote from Tolle that I open with above, many authors who write about mindfulness and the alleviation of suffering have accepted and re-purposed subtle and not-so-subtle cultural and religious messages about chronic illness in their work. They say that people “attract” illness to themselves; that illness is the natural outcome of negative feelings; that we need to try harder at being more present, more aware, more at peace, and then our illnesses will go away because they’ve taught us the “lesson” they were there to teach us. I am always shocked when I see these messages, sometimes subtle or implicit, sometime overt, mixed in with what is otherwise very helpful advice. Certainly, it’s more likely that someone will get sick with a cold or minor infection when they scrimp on sleep and eat a diet lacking in necessary nutrients (often as a result of “stress”). But that kind of “sick” is very different from cancer or autoimmune or genetic disease. And it tells me that these authors–like many physicians– have never had to deal with a persistent chronic condition, and find it difficult or even frightening to empathize with someone who has. Are we really still retracing the steps of the disproved “Cancer Personality” hypothesis or the “repressed anger” stereotype of the “Rheumatoid Arthritis Personality”?
I guess it just comes down to “take what you need and leave the rest.” I shouldn’t expect people to “get it,” even if they seem otherwise enlightened. In the meantime, if anyone is interested in an excellent book about mindfulness and chronic illness, I highly recommend How to Be Sick by Toni Bernhard.
A Year with Kineret (Anakinra): Some Reflections
As I near the one-year anniversary of starting my Kineret injections, I want to take a moment to bask in the glow of getting my inflammatory arthritis into remission. I was one of the lucky people who responds to anakinra almost immediately, with a significant reduction in symptoms (in my case a magical ACR70 level of improvement) within six weeks. My rapid response further cemented my rheumatologist’s hunch that my arthritis is autoinflammatory rather than autoimmine in nature, and closer to Adult Onset Still’s Disease (AOSD) or Tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS) than to seropositive Rheumatoid Arthritis. We also briefly hoped that my success with Kineret meant that all my symptoms had been from AOSD/TRAPS and would resolve with Kineret treatment, but a recent Lupus flare–likely triggered by reducing prednisone and plaquenil–unfortunately suggests otherwise. (That, however, is another story for another time.)
Kineret gave me my hands and feet back. It also helped to control my frequent low-grade fevers and GI symptoms. It has improved my skin rashes. I’ve had fewer secondary infections. I have more energy on a lower dose of prednisone. Compared to how I felt two or three years ago, the change is nothing short of miraculous, and you can see it in my hands:
Left: 2014, Right: 2011
But Kineret isn’t for the faint of heart. It requires a daily injection. Every single day. And the solution is considered “preservative-free” but it contains sodium citrate– also known as citric acid. This means the injection feels about as good going in as pouring lemon juice in a paper cut. In additional to all the regular scary warnings that come with biologics (risk of infection, malignancies, anemia), there’s also a high chance (about 70%) that you will develop an injection site reaction (ISR) during the first four weeks of treatment. I made it through the first two weeks without incident, so I thought I had escaped the window of opportunity for an ISR. Wrong. Oh, how wrong I was.
When the rash first started to appear in small clusters of red bumps, I though I was having an allergic reaction to something environmental, like laundry detergent. Then, a few days later, the initial clusters became enormous plateaus of raised, angry welts. (Meanwhile the newer injection sites produced the small clusters.) In a few more days, the big welts would harden and darken, like bruises. At this point, they managed to be both painful and itchy simultaneously. It was during this time that I was trying to run a 300-person conference, so I dosed myself with antihistamines at night and periodically applied antihistamine gel during the day and tried so very hard not embarrass myself by scratching my upper thighs in public. As I swelled up and the injectable real estate on my thighs got more and more exclusive, I thanked whatever deities might be listening that I hadn’t tried injecting my stomach.
While all this was going on, I tried to search for pictures of anakinra ISRs online, but nothing useful came up. So for the sake of science, and other autoimmune and inflammatory arthritis patients, this is what Kineret (anakinra) injection site reactions look like. (ISR photos below the cut.)
For God’s Sake Don’t Call it a Gift
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.
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?
Absence and Return
“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.