Pretending to be normal
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.
Super-crip Narratives and the Burden of Disability
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?
"No!"
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. 😉
flare and remit
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.
spoons + willpower = ?
I mentioned a few months ago about how I was procrastinating by reading a book about procrastination. In a similar realm of the ironic, I’ve been avoiding some of my own academic research by reading a book on… wait for it… academic research on willpower. Despite this so-called procrastination, I am coming to the conclusion that I have a great deal of willpower, and that my problem is not so much the will to begin (or complete) tasks, but rather the basic reserves of energy necessary to power that “will” into action. Will requires spoons. Which tells me that I need to work on being more realistic about how much I can actually accomplish in a given day or week or month, since the spoons come and go. That and I need to continue to hone my prioritizing skills. None of this sounds particularly thrilling, but I have to admit I feel a small sense of accomplishment at how smoothly my little world manages to run, despite my sense that life keeps throwing obstacles in my way. (I sometimes imagine an autoimmune troll gleefully throwing nails onto the road in front of my car.)
The book I’ve been reading is Willpower: Rediscovering the Greatest Human Strength. My interest was originally piqued when I read this interview between The Happiness Project‘s Gretchen Rubin and Willpower co-author John Tierney. I’m only about halfway through the book, but I’m fascinated by the contemporary anecdotes, historical figures, and psychological research that fill the chapters. One of the phenomena that Tierney and his co-author Roy F. Baumeister (a leading researcher on self-control) focus on in the early chapters is the concept that willpower is a finite resource that becomes depleted as we use it. Though they divide willpower into four broad categories (control of thoughts, control of emotions, impulse control, and performance control), they note that we “use the same stock of willpower for all manner of tasks.” For people with chronic pain, research suggests that our stock of willpower is consistently depleted by all the energy we expend trying to ignore our pain. No wonder we’re consistently short on both energy and “will.”
My pain levels have increased again in the past week and I’m not sure why. Likely it’s a combination of med changes, the weather, the absurdly high pollen count, and some added work and school stress. As my pain goes up, my productivity (and mental sharpness) goes way down. I’ve had a few insights about willpower and chronic illness while reading Baumeister and Tierney’s book, but I think I’ll hold off on talking about them until I finish it. In the meantime, let’s hope I can get a handle on this latest round of pain.
I hope everyone else is having a good week, despite this unseasonably warm weather all over the US. For my readers from elsewhere (Australia, NZ, England, Europe…): has your weather been strange? Or are we just in the midst of a North American heat wave?