my nine-pound ball of love
Our perfect companions never have fewer than four feet. ~Colette
I’m writing this post with my new Dragon Dictate software. I’m not sure I’ve quite gotten the hang of thinking out loud–literally–yet. It’s strange to hear my own voice echoing against the walls of my apartment, a space that is usually so quiet. My cat, Stella, is sitting on the couch next to me. We both just heard the sound of another cat meowing and turned to look at one another. She has now turned back to the more important task at hand, napping, and tucked herself against my left hip, her chin resting on her paws. I think that she is used to hearing me address her in the singsong baby talk voice I always swore I would never use with a pet or child. This strange, serious dictation voice, however, is not my “normal” voice, singsong or otherwise. But I’m not worried. I’m sure we will adjust to this, just as we have adjusted to all the changes we’ve both encountered over the past six months.
I resisted adopting a cat for many years. I always said I was “more of a dog person,” or that I was too busy to have a pet. And I was. In a previous life I was gone every other weekend, flying to New York or Los Angeles, attending conferences, always on the move. But then I got sick. And not briefly sick, like I had been before, not sick for a few weeks or a month, but sick for months and months. And suddenly that part of my life ended. The radius that separated me from the circumference of my life shrunk from thousands of miles to less than one hundred. Travel began to take serious planning and mean a gamble with my health. I’m not even sure that I was aware of this at the time. I was too busy with the business of being sick, and trying to get well. I know I didn’t grieve the shrinking boundaries then.
The Sunday before Labor Day, I decided to take a trip to the Atlanta Humane Society. I told myself I was “just looking,” but I picked up a litter box just in case. I spent time with four cats that afternoon. In the last 30 minutes before the shelter was closing, I met Stella. Or maybe I should say that Stella found me. And now I can’t imagine my life without her. She keeps me company while I’m working, she greets me at the door when I come home from school, she sleeps next to me on the bed and sometimes—when I wake up in the middle of the night—I reach out to pet her and I am reassured, just knowing she’s there.
This entry was composed as part of the ChronicBabe blog carnival “you are loved.”
Sloppy Medical Reporting in Mainstream Media (and Why it Makes Me Crazy)
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?
