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?
You might think from the title of this post that I’m channeling my inner toddler. But the truth is that I’m actually quite proud of myself for finally tapping into my ability to say “no.” Three times today I put my foot down and refused to take on unnecessary responsibilities and projects that I had not agreed to.
I’m not really what you would call a “pleaser,” but I do suffer from symptoms of the chronic overachiever. Add to that my fear of being seen as weak or lazy, and you have a terrible recipe for overcommitment. I hate having to say no, even when I feel overwhelmed or don’t really want to take on a task or responsibility, because doing something I dislike seems easier than appearing incapable. (How many times have I burst into tears because I realized I had a flare or an acute illness coming on? Too many times to count. It always feels like I’m letting myself and everyone else down.)
No more. My time and energy are too precious to waste. I have a dissertation to finish and I don’t care how highly regarded I am by my friends and colleagues, but I am not taking on any additional ambivalence-producing* editing, web design, teaching or administrative duties until this damn thing is written.
*But if something comes up that I feel unqualified enthusiasm about, I reserve the right to consider it. 😉
I’m scheduled to meet with US Senator Johnny Isakson (R-GA) next week to discuss specialty tier medications and how medicare and commercial insurance policies are preventing patients from accessing life-saving medications. Anyone else negatively affected by specialty tier pricing? I’d love to share your stories as well as mine.
It’s been nearly four months since I last blogged. I suppose that means I’ve been on a bit of a hiatus, partly intentional, partly unintentional. My personal life imploded in April, and while I won’t go into it here, I will say that some of the issues have been resolved, and some haven’t. I am trying to be at peace with uncertainty.
The sense of uncertainty extends to my health as well. I had a good five month stretch of prednisone-enabled denial, where I was nearly symptom free. It was lovely, but obviously too good to be true, and about a month ago my symptoms started to emerge again. My rheumy had hoped that a few months of continuous steroids would allow the additional Plaquenil/HCQ to take effect, and then we could taper down again. Unfortunately, it hasn’t quite worked like that, and I find myself with considerable pain and fatigue, despite being on the highest dose of HCQ for my weight, and a maintenance dose of steroids plus massive amounts of ibuprofen (and everything else…). So we’re onto the next DMARD, Arava. Or trying to be. My insurance has denied coverage for it, even in generic form, so I’ve spent the last three weeks battling that and also applying for medication assistance through Rx Outreach.
Back in June I gave a talk on children’s literature and illness narratives at the Society for Disability Studies conference in Denver. It was my first year attending, and I have to say that the conference itself was an extraordinary and often joyful experience, though not without some feelings of anger and frustration. I think in some ways it is even harder to have an invisible illness or disability among people with visible and/or mobility-related disabilities. The scrutiny is much higher, and some people can be much quicker to judge or assume that one is able-bodied. I felt significant pressure to “explain myself” and my presence at the conference. I’ll have to write more about the experience in another post.