Those of you who have been following this blog for a while may remember my post about not making New Years resolutions last year. While I haven’t really made any resolutions for this year, except to continue my (un-)resolution from last year of being kinder to myself, I have spent the past few months thinking a lot about food, and sugar in particular. I read Gary Taubes’ Why We Get Fat a few months ago, and it’s really changed my thinking about nutrition. I’m going on vacation next week, and plan to be as indulgent as I like because, hey, it’s vacation! But when I get back, I’m thinking about making some significant changes to my diet, though not for the reasons you might expect.
As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.
In the last few days, my Google News feed has been full of media reports about a recent study that was published in the medical journal Arthritis Care & Research. The complete title of the article is “The public health impact of risk factors for physical inactivity in adults with rheumatoid arthritis” and the abstract can be found here. The preferred headlines in places like USAToday, WebMD, and About.com read “2 in 5 Rheumatoid Arthritis Patients Sedentary” and “Too many rheumatoid arthritis patients inactive, study finds.” I am incredibly frustrated by both the design of the study and its attention from major media outlets, as well as the underlying assumptions it (and the reporters who have summarized it) make about individuals with Rheumatoid Arthritis (RA) / Rheumatoid Autoimmune Disease (RAD).
1. Research design issues:
First of all, the study involved only 176 adults and it followed their activity level for 7 days. So one week of data based on the experiences of 176 people is being used to extrapolate to the behaviors of the 1.3 million Americans who have RA/RAD. In addition, while the study asked participants to rate things like “lack of motivation” and “lack of strong beliefs” regarding exercise, it’s not clear whether they were experiencing pain at the time of the study. Though the abstract claims to have taken pain into consideration, no information is provided regarding self-reported pain levels or Disease Activity Score (DAS). We have no idea if these individuals had long-standing, well-controlled RA or if they were actively flaring during the (very brief) study.
2. Misplaced media attention:
Despite the small scale of this study, it has made headlines. Why? Likely because it is a relatively straightforward study that makes clear, easy-to-implement recommendations. (“These results support development of interventions that increase motivation for physical activity and that lead to stronger beliefs related to physical activity’s benefits should be considered in public health initiatives to reduce the prevalence of physical inactivity in adults with rheumatoid arthritis.”) Basically, physicians just need to convince RA-ers of the importance of exercise and they’ll do more. It makes a great sound bite and summarizes well, plus it plays into the ongoing obsession with the so-called “Obesity Epidemic” and the American tendency to place blame on individuals and their behavior for chronic health problems.
In the same issue of Arthritis Care & Research two articles on much larger, and to my mind more important, RA/RAD-related studies were published. Both studies came to the conclusion that physicians need to do a better job of assessing and treating their patients’ pain. One, “Pain as an important predictor of psychosocial health in patients with rheumatoid arthritis,” involved over 15,000 patients and showed a direct link between high pain levels and “psychosocial health variance” (depression, anxiety, negative outlook, etc). The other, “Determinants of discordance in patients’ and physicians’ assessment of rheumatoid arthritis disease activity,” had a cohort of over 7,000 patients. There was a significant disagreement between patients and their doctos in 36% of cases, primarily related to self-report of pain and fatigue. The authors conclude: “Sensitivity to the “disease experience” of patients, particularly pain and fatigue, is warranted for effective care of RA.” Why don’t studies like these appear in popular media?
3. Damaging assumptions: RA patients are lazy and don’t understand the importance of exercise
Based on my experience of talking with other autoimmune arthritis patients, many of us were extremely active in the months and years prior to diagnosis. We are now depressed and unhappy that we have neither the energy nor the strength to continue to exercise like we once did. As recently as a year and a half ago, I was running 10 miles a week and taking dance and yoga classes on top of that. In the past four months, I’ve been to the gym exactly twice. My current activity level rarely goes beyond walking and gentle stretching. How can it when I get winded and dizzy from walking up a flight of stairs? (And it has to be a good day for me to take the stairs at all!) The pain in my hands and wrists prevents me from doing many of the yoga poses I used to love, and the pain in my feet makes walking long distances painful and running or dancing nearly impossible. I have lost 15-20 pounds in the past year and continue to lose weight. I know, from Kelly’s posts at RA Warrior, as well as the conversations I read on Facebook and twitter, that many of us deal with loss of strength and cachexia (muscle wasting), or at the very least are prevented from exercising on a regular basis by the constant pain and fatigue caused by our disease. We understand the benefits of exercise. Perhaps if the studies that focused on managing pain got more attention, we would have more resources to manage our pain, and ultimately be more active. It cannot be the other way around.
When will doctors and researchers see us as individuals who want to be as healthy and pain-free as possible, rather than as Disease Activity Scores and swollen joint counts?
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.