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?
Ooph. I am so glad to be sitting on my couch, listening to Adele, with nothing more pressing on my mind than whether I should make myself a cup of tea or not. The last couple of weeks have been extra busy for me. Not only did the new semester begin, but I had a public dissertation prospectus defense on Monday (I passed, yay!); extra advising duties Tuesday, Wednesday, and Thursday; an interview on Thursday; and a conference on Friday, where I had to present at 9AM. I made it as far as dinner last night and then had to bow out of the rest of the evening’s activities. I went to bed shortly thereafter and woke up 14 hours later. My joints, especially my hands and feet, are not terribly happy with me, but I feel quite accomplished nonetheless.
As much as I would like to return to living my life the way I was before I was really sick– or even the way I felt last summer when I got that first big flare under control (sad how I’ve adjusted my goal to being less sick rather than not sick, eh?), this week reminded me that with careful planning I have the mental and physical reserves to get through these kinds of personal and professional challenges successfully. I have to give myself credit too, instead of discounting my success, thinking “Well, two years ago this would have felt like a normal week, what’s the big deal?” In a world were many many people with lupus/RA diagnoses quit their jobs and/or go on disability within a few years of diagnosis, just working at all, let alone writing a dissertation while also working, is an immense accomplishment. And I need to remember that. I also try to remind myself that I’ve barely scratched the surface of treatments– it won’t always feel this bad (I hope).
So I’m officially a “PhD Candidate” now; time to buckle down and write the dissertation. No more coursework, no more required teaching… someday soon it will be time to move on to the next phase of my life. I’m doing my best to look toward it with excitement rather than trepidation. We can’t know what the future will bring, but I suppose a positive outlook never hurt anyone, right?
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.
Apparently my new years resolution should have been “clean out and reorganize the catch-all closet.”
Why? Because that’s what I’ve been doing for the last three days. And as soon as I muster the strength (or convince a friend to help) to cart the remainders off to the thrift store, the project will be complete.
I love a well-organized space. It makes me feel like a weight has lifted off of me. No more downing in “stuff,” literally or figuratively.
I was going to blather on about hoarding and anxiety, but I’m sure someone else has already said whatever I was going to say. Probably Martha Beck, in one of her insightful columns for the Oprah magazine. So instead, check out this amazing (hoarding-related) art project: Barbie Trashes Her Dreamhouse (flickr set from the artist here).