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?
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?
Physical pain does not simply resist language, but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.
—Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (4).
In many ways I’ve had a good week—I received great feedback on my research and teaching, spent quality time with friends, prepared for the holidays, reconnected with loved ones who live far away, attended an engagement party for a dear friend, and welcomed a new baby into my extended family. But I’ve also had one of the most painful weeks on record since last May (= the vasculitis debacle). And everything fades into a sort of dull background when my mind and body are so exhausted by managing the pain.
It’s been a week now since I took my first dose of injectable MTX (I took my second dose last night) and unfortunately, for the past week I’ve had an intense flare of joint pain, swelling, and general exhaustion (and possibly kidney involvement? 5+ lbs of water weight gain suggests “yes,” but it’s hard to tell). I don’t know if there’s a causal relationship between the MTX and the flare. I would like there to be, but I doubt it. Likely the flare is the result of the stress of the end of the semester and the beginning of the holidays combined with massive weather fluctuations and the generally unpredictable nature of flares.
I wish I had some easily controllable catalyst I could pin the cause of my flares to—sugar, caffeine, alcohol, lack of leafy greens, too much meat, nightshade vegetables, too little sleep, etc—but sadly, that doesn’t seem to be the way my illness works. (Plus, I’ve cut or severely limited most of the items on the preceding list anyway. I’m the healthiest sick persion I know. The baking I tried to do last week seems a much more plausible cause.) But I’m not feeling particularly hopeful that the injectable MTX is going to be any more helpful than the oral. On the other hand, being on the MTX this fall has made my seasonal allergies almost invisible, so at least it’s having something of an impact on my overvigilant immune system. But I’m so tired of waiting for something to control my arthritis!
I’ve had a lot of friends ask how I’m doing in the past few days, and it’s hard to know what to say. I usually go for my default response when someone is genuinely concerned (and not just offering a polite, social-lubricant “How have you been?”): “It’s been a rough week.” Often, they assume I’m talking about work, not about my health, and I usually let them persist in that assumption. Because once we get past those opening lines, I’m never sure where to go next. I know that we all struggle to describe the pain we experience—I see it come up over and over again on the blogs I read and with my friends and acquaintances on Twitter. We tell people we’re in pain, but they just don’t get it.
I even struggle to explain to my doctors the kind of pain I’m experiencing. I realize, in hindsight, that my explanation of “everything hurts,” while literally true, did nothing to assist in the diagnosis of a connective tissue disease. Doctors hear “everything hurts” and they think fibromyalgia (or CFIDS/ME, and/or depression). And while many of us have coincident fibro to go with our other rheumatic diagnoses, it’s my experience that a primary fibro diagnosis will prevent other doctors, even rheumatologists, from looking for additional causes for joint pain and fatigue. (Not that I’m bitter that it took anyone years to test my ANA and CRP. Nooo, not me.) So I’ve become very conscious of differentiating between “all over” diffuse pain and the distinct, precise pain of specific joint inflammation, even if those joints are seemingly “all over.” (Which they were this week. Even my jaw, which was a new one for me and oh my f—king goodness did it hurt.)
But what, exactly, does the joint pain feel like? When I try to describe it, I lapse into bad analogies and similes, the kind or purple prose I ask my students not to use in their essays:
I wish I could say that these are simply the creative inventions of a poet, which I suppose they are, since I am a writer of poetry, but they are also the closest I can come in language to describe the pain I experience on a regular basis.
And when the pain becomes more than I can bear, it’s like my brain places a sheer curtain or a piece of frosted glass between me and my body— really between me and all my perceptions of the world. The pain becomes more diffuse and manageable, but all sensation and thought becomes cloudy, dampened, and difficult to sustain. Periodically the specific pain of individual joints breaks through, and I become both distracted and distraught. After several days (or weeks) of this, I’m an emotional wreck. So much of my energy is expended trying to manage and ignore the pain that I cannot focus on anything else, and little annoyances become insurmountable obstacles. Painkillers dull but do not silence the pain and bring their own set of annoyances and side effects.
How do you describe the pain of your arthritis or chronic illness? Do you even try?
This post was written for the current PFAM blog carnival, hosted this round by Sharon at Bed, Body, and Beyond.
I have been avoiding writing this post. No, scratch that, I have been avoiding writing. Period. I could say this is because it’s the end of the semester, that I’m busy with teaching and editing and advising. I could say that I’ve been busy preparing for the holidays, that I haven’t been home much. But none of that would be entirely true.
I have a Flannery O’Connor quote in my profile that reads “I write to discover what I know.” And right now? I’m avoiding writing because I’m afraid to face what I already know. I never wanted this blog to be only a place for me to whine and complain, and I feel like lately that’s all I’ve been thinking about. I’ve been moping about all the things that illness has taken from me. Because the truth is that despite a few good days, the past month has been immeasurably difficult. And part of the difficulty comes from the fact that I persist in the charade that I am still as able-bodied as I ever was. When I’m not.
As the holidays approach, I can’t help but think about all the things I used to do that I can’t do right now: crochet and knit, hand-make holiday cards, roll out cookies and pie crusts, stand in the kitchen cooking and baking all day, making preserves and candy and sauces to give to friends and family as gifts. I have always shown my love with the work of my hands. I hope that there will be a day in the future when I can do all these things again. But I don’t know that. Because my desire to do those things can only take me as far as my body’s new limitations. And to be truthful I feel physically worse right now than I have in a long time. I’m frustrated, I’m sad, and I’m struggling to be hopeful. I knew all that already, but it still stings when I type it out in the little Blogger “new post” window.
I’m not very good at asking for emotional support when I need it. I don’t like to be seen as needy, or melodramatic, or weak, and so it’s hard for me to reach out. I suppose this blog is my tiny way of reaching out. Extending my life and my empathy in the hope of multiplying the amount of care I am capable of both receiving and giving.
Tomorrow I see a new rheumatologist and continue this convoluted journey of diagnosis and treatment. And I will continue to write about it. Even if my insights about myself and my life sometimes sting. Because ultimately I write for you: young, old, newly diagnosed, undiagnosed, long-diagnosed, wise, innocent, happy, sad, hopeful, disabled, able-bodied, brilliant, contemplative, compassionate you. Thank you for being my reader. You help me to know my self and the world.
No matter what these illnesses take from me, they will not take my ability to think and create in some form. No matter how fast—or slow—I type, it’s still always one letter at a time.
I’ve been dancing since I was three years old. That’s over 90% of my life. Around the time I turned 10, I decided that what I really wanted was to be a ballet dancer. I spent hours every day in dance classes, not just ballet, but other kinds too, and I put every once of energy I could find into it. The first time I had a major injury, which in retrospect was probably a disabling flare of inflammatory arthritis, I was 12. My knee swelled up and the soft tissue began to calcify, so I had to take 6 weeks off from dance. I didn’t mind getting excused from middle school PE class, but having to sit out ballet class was the worst. I had just been allowed to start wearing pointe shoes the year before and it had been one of the proudest moments of my life.
|Dancer’s Shoes by Neville Elder|
Whether you’ve seen Black Swan or not, you probably know that ballet is a punishing art form, calling for an incredible amount of work, dedication, and control. The body standards for professional dancers are harsh and unforgiving, and many many dancers admit to controlling their weight through unhealthy means like laxatives, heavy smoking, and disordered eating. The funny thing is that I never fell into those habits. I was naturally thin, I had strong muscles, innate musicality, and I could forget myself in the challenge of a dance class like nowhere else. My freshman year of high school I was in a production of the Nutcracker with a local professional ballet company and I idolized the older girls who danced the principal roles (while also working on college degrees— I remember them reading psychology textbooks backstage between dances). A year later, I got sick again and then went through a growth spurt and wound up at nearly 5’10”. I knew I wasn’t going to be the next Suzanne Farrell, so my ballet career took a backseat to my interests in theater, music, and writing, but not without a great deal of mourning. I’ve continued to take ballet classes on and off as a adult and it’s one of the things that I’ve missed most during the past 9 months that I’ve been acutely sick. Dance requires and engages every ounce of my attention and creativity. It makes me feel alive and grounded in my body in a way that few other experiences do.
The girls in the video below describe their techniques for “breaking in” their pointe shoes. I had my own technique, involving rubbing alcohol and a lot of bending, plus tape for my second and fourth toes and a special way of sewing on my elastic. In particular, I like that the video shows the reality of dancers’ feet. The irony? Arthritis has done far more damage to my feet than ballet ever did. I now look like I have the dancers’ feet I might have had, but from autoimmune arthritis, rather than years of classes and rehearsals.
In looking for references to Suzanne Farrell, I discovered that George Balanchine’s fourth wife, Tanaquil LeClercq, whom he divorced to try to woo Farrell, was struck by polio at the age of 27 and paralyzed from the waist down, ending her dance career. The Wikipedia article about LeClercq describes the horrifying irony (in retrospect) of her first dance with Balanchine:
When she was 15 years old, George Balanchine asked her to dance with him in a choreography he made to be performed at a benefit for a Polio charity. In this ballet, Balanchine was a character named Polio and Tanaquil was his victim who became paralyzed and fell to the floor. Children tossed dimes at Le Clercq, whereupon she got up and danced again.
|Tanaquil LeClercq, 1947 by Irving Penn|
I suppose none of us is immune from broken dreams and lost opportunities, with or without chronic illness. But life goes on (I hope), becoming rich in new ways if we can be open to it. I would, however, prefer no one throw dimes at me during the process.