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?
“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.
I’ve been thinking a lot lately about anonymity and privacy on the web, and I have to admit I’m feeling mighty ambivalent. Which is not to say indifferent; I mean ambivalent in the “moving back-and-forth between two poles” sense. I have strong feelings about both positions.
When I started this blog, it was in the months prior to my initial diagnosis, when I was sick and undiagnosed, stressed out by my PhD exams, and grappling with the emotional fallout of a breakup. I was just looking for a place to vent a little, and to write things down so that I might get some sort of pleasure or closure by ordering and narrating the events of my own life.
But then I got diagnosed with lupus, and I realized I couldn’t talk to very many people in my everyday life about what was going on. So I joined several forums, I created a Twitter account, and I started collecting (and connecting) to other blogs about lupus, arthritis, and autoimmune disease. Somewhere in the middle of all of this, I applied—and was accepted— to be an ACR Advocate for Arthritis. Suddenly I had gone from Megan: Autoimmune Girl Blogger to Megan: Autoimmune Arthritis Patient Advocate.
And here is where the great ambivalence set in. I know that I could be a more powerful force as a patient advocate if I revealed my full identity, but I also know there are consequences to the choice to “come out” and tell my story publicly.
I say a lot of revealing things in my guise as “mirroredlens.” I talk about my diagnoses, my meds, my pain, and my interactions with medical practitioners. I write about my experience of being visibly and invisibly ill and disabled, and how this affects my self-identity, my being-in-the-world, and my goals and fears for the future. I do this because it helps me make sense of my life. But I also do it because I’ve relied on the same kind of first-person narrative from other bloggers and writers to guide me and comfort me, and I want to be able to offer the same kind of guidance and empathy in return.
Despite all of my “virtual” honesty, the group of people I interact with face-to-face who know the details of my illness is relatively small. Partly this is because my diagnosis has been provisional for so long and I prefer to do as little explaining as possible. (“Huh? Wait, I thought you had lupus. Now you have RA too?”) But also because a) I am allergic to pity; and b) I am all-too-aware of the implicit and explicit discrimination toward people with disabilities. And it’s that second part that keeps me from removing my not-particularly-opaque veil of anonymity.
Now clearly I haven’t done a whole lot to obscure my identity on here– I have a photo (yes, that’s really me) and I use my first name. But I haven’t made any explicit links to other parts of my life, online or otherwise. Why? Because I am still (meds and disease activity willing) committed to pursuing a career once I finish grad school, and I am concerned that by disclosing my status too publicly I will jeopardize my chances at an academic job. (Google has a very long memory and the academic job market is ridiculously competitive. The reach of the ADA only goes so far.) It shouldn’t be that way, but it is.
So for now, my identity as a blogger remains separate from my identity as an academic, and my advocacy work falls somewhere in the middle, tenuously connecting the two. I know that I could be a stronger advocate by making those links legible, and I would likely also strengthen my academic work on disability theory by disclosing my status as a person with a chronic illness. But I also know that there are long-term consequences to that kind of candor, consequences that I’m not yet ready to negotiate.
I posted the following letter to my Facebook account today, in honor of World Arthritis Day. I know most of the readers of my blog are already far too well-acquainted with autoimmune/inflammatory arthritis, but for those of you who aren’t, or who are interested in the current “arthritis situation,” particularly in the US, see below.
This is long, so I want to thank you in advance for reading. I’ve put some key points in bold, so feel free to skim. It means a lot to me that you are kind (or curious) enough to click though and read this.
If, on second thought, you only have a minute, forget everything you thought you knew about “arthritis,” and go read this 60 Second Guide to Rheumatoid Arthritis (RA).
If you’re up for a bit of an essay:
You’re probably looking at the title of this note and thinking “World Arthritis Day? What does that have to do with me?” Well, a lot, actually. Did you know that 1 in 5 Americans has been diagnosed with arthritis (~50 million) and public health experts expect this number to continue to rise as the population ages? (1) Many people think of arthritis as a disease of the elderly, but that’s only part of the story. Nearly two-thirds of arthritis diagnoses are in people under the age of 65, including children, teens, and young adults (1). Likely several people close to you have been affected by arthritis, though you may not know it because the symptoms are often invisible.
“Arthritis” is an umbrella term that covers over 100 different diseases and conditions. The most common form of arthritis is Osteoarthritis (OA), the kind of wear-and-tear, comes-with-old-age arthritis that is limited to the joints, is generally diagnosed in older adults, and can often be managed with exercise, weight loss, and over-the-counter medication. However, among those 100 kinds of arthritis, there are roughly 30 forms of autoimmune arthritis (also sometimes referred to as “inflammatory rheumatic diseases” or “inflammatory arthritis”) that can be life-threatening and affect not only the joints, but organ systems throughout the body, for example the heart, brain, eyes, lungs, GI tract, skin, and vascular system. In these diseases, the body turns against itself, deploying the immune system in the destruction of its own joint linings, organs, and connective tissues. Some common types include rheumatoid arthritis (RA), lupus (SLE), scleroderma, juvenile idiopathic arthritis, and Sjogren’s syndrome (recently brought to national attention by tennis star Serena Williams (2)). It is not uncommon for an individual to be diagnosed with multiple or overlapping autoimmune conditions, or to have several years pass between the onset of symptoms and a final diagnosis.
Currently, over 7 million Americans suffer from autoimmune arthritis and inflammatory rheumatic diseases, with women and minorities disproportionately affected. (The total for all autoimmune diseases, not just those under the arthritis umbrella, is estimated at about 24 million). These diseases are frequently diagnosed between the ages of 15 and 50, often striking individuals as they enter college, join the workforce, and/or try to start a family.
What exactly does this “7 million” mean for you? According to the Mayo Clinic, if you are a woman, you have a 1-in-12 chance (8.4%) of developing an inflammatory autoimmune rheumatic disease in your lifetime (3). For men, that number drops to a still-surprising 1-in-20 (2). By comparison, a woman has a 1-in-8 (12.15%) chance of being diagnosed with breast cancer in her lifetime, but only a 1-in-36 (2.81%) chance of dying from the disease (4). Yet the funding disparities between arthritis and other diseases are depressingly large. (5) In addition, it’s difficult to determine specific risk factors or causes for these diseases; while there seems to be a genetic predisposition in some patients, no one knows exactly what causes the onset of autoimmune arthritis.
Autoimmune arthritis and cancer are treated with many of the same drugs, including chemotherapy and newer biologic medications used to suppress parts of the immune system– you may have seen advertisements for these on TV, like the one for Enbrel featuring golfer Phil Mickelson. These drugs are expensive, powerful, and dangerous, but for those people with autoimmune arthritis who can both tolerate and afford them, the benefits generally outweigh the risks. Unlike the majority of cancer survivors, however, autoimmune arthritis patients must remain on a low dose of these drugs for the rest of their lives in order to prevent crippling disability and organ damage because there is no cure. Even with well-controlled symptoms, the life expectancy of a person with a disease like rheumatoid arthritis can be shortened by 3 to 15 years (5,6).
There are also a bunch of other unpleasant details that go along with autoimmune arthritis. Apart from excruciating pain, the symptom common to nearly all forms of autoimmune inflammatory arthritis is fatigue. And not just “oh, I’m a little tired today” fatigue, but the kind of bone-tired fatigue that accompanies a bad case of the flu. This is one of the hardest symptoms for patients and their doctors to manage, even after inflammation and pain have been reduced. In addition, medications used to suppress the immune system cause all kinds of unwanted side effects, which can include weight gain, weight loss, hair loss, cognitive impairment (aka “brain fog”), sun sensitivity, insomnia, increased risk of infection, increased risk of certain kinds of cancer, and more. On top of all of this, grappling with the long term effects of a chronic, painful, incurable, and often invisible disease can be downright depressing, even for the most optimistic person.
So the next time someone mentions that he or she has arthritis, pause a second before you say something like:
Because in many cases the answer will be “no”: No, I’m not too young. No, your grandma probably doesn’t have what I have. No, tylenol/glucosamine/some extreme diet/internet-cure-of-the-week won’t help. Yes, exercise is good, but only low impact, and only when inflammation is under control. Chances are, however, polite questions, or a simple “Is there anything I can do?” will be much more graciously received.
For more information, or to find out how you can get involved– even just by emailing your elected officials– visit the Arthritis Foundation, especially the section on advocacy, or the World Arthritis Day website. Or you can just ask me. Knowing is half the battle, right? Thanks for reading.
Tomorrow I will be meeting with members of congress to urge them to consider the needs of patients with arthritis and the physicians who treat them. Though I am often frustrated with the political process, I am also filled with enormous love for this country, with its messy representative democracy that lumbers along, beautiful and tragic all at once. To be part of the process, no matter how small, is both a great honor and a great responsibility.
by Denise Duhamel and Maureen Seaton
The perfect voter has a smile but no eyes,
maybe not even a nose or hair on his or her toes,
maybe not even a single sperm cell, ovum, little paramecium.
Politics is a slug copulating in a Poughkeepsie garden.
Politics is a grain of rice stuck in the mouth
of a king. I voted for a clump of cells,
anything to believe in, true as rain, sure as red wheat.
I carried my ballots around like smokes, pondered big questions,
resources and need, stars and planets, prehistoric
languages. I sat on Alice’s mushroom in Central Park,
smoked longingly in the direction of the mayor’s mansion.
Someday I won’t politic anymore, my big heart will stop
loving America and I’ll leave her as easy as a marriage,
splitting our assets, hoping to get the advantage
before the other side yells: Wow! America,
Vespucci’s first name and home of free and brave, Te amo.