By: Magdalena Mihaylova
The moon or the sun? A photo taken by the author showing their duality.
The air was the kind you feel like you could drink. I took big, selfish gulps of it, happy to have found an empty stretch of concrete on a day so beautiful it had coaxed everyone out of their quarantine caves and into the March sunshine. The bright rays had just started to prickle at my forehead, and I found relief in the shaded road, lined with tall, skinny evergreens. As I biked up a steep hill, a sweat started to form under my sports bra and behind my ears, and my thighs burned with the familiar feeling of muscles at work.
In that moment in early 2021, I was there, really there, present. I felt like a part of everything, and I was conscious of not only the world around me, but of the world inside of me. I was aware of the birds flying overhead, cooing their little tunes, but also of the thudding of my heartbeat, reminding me I was alive, breathing, moving.
I was diagnosed with an autoimmune disease when I was six years old, and since then, I have always been extra observant of my body. Like a hawk circling a wide meadow, I would scan myself for any changes, pains or odd feelings. Is my vision blurry or am I just tired? Am I sore from soccer or are my joints stiffening up? These days, I scrutinize most decisions I make on the backdrop of my body. Will this glass of wine trigger a flare? Didn’t I read that less sleep means more inflammation?
Ironically enough, my disease is largely asymptomatic, which probably lent itself to my hypervigilance—in a way, I wanted confirmation of my disease. If no one, not even myself, could tell what was going on with me, why was I being prescribed medicine that made me dizzy, why did my parents exchange concerned looks in sterile waiting rooms and why did my breath catch every time my doctor examined me? In other words, I existed in a space of both feeling normal yet knowing I wasn’t. I never felt “sick enough” to justify my sadness or fear over my disease, and yet I suffered because none of my friends had to inject themselves with needles every two weeks or travel to another state to see a doctor.
Similarly, not knowing why my body was reacting in this way made coming to terms with my disease difficult. Autoimmune diseases are, on the simplest level, your own body fighting itself. The body senses a threat where there is none and produces autoantibodies that attack healthy cells—causing inflammation, pain and damage. Many autoimmune and chronic diseases are idiopathic, meaning the cause of the condition is unknown, as is the case with mine. Often one experiences calm periods of no symptoms, followed by “flares'' of the disease, and while there are certain presumed triggers for flares, such as stress or sunlight or even some foods, these spikes in symptoms can also just be random. So while I can understand more or less what is happening with my body biologically, I can’t point to a specific event or choice or reason that caused the malfunctioning. This has influenced my relationship with my body: sometimes I feel guilty, as if I am hurting it without realizing, or sometimes I get angry, regarding it as separate from myself, thinking it is betraying me. I have even silently encouraged it, hoping that it hears my message and just decides to relax.
The mind-body divide mentality that I have adopted reflects a theme both in the medical spaces I frequented and in American society generally. Western medicine largely subscribes to the philosophy of mind-body dualism, which posits that the mind and body are two separate entities. In medicine, this “holds bodily illness to be separate from and unaffected by the patient’s consciousness, while a second profession, that of psychiatry, attempts to treat mental maladies independently of a patient’s physical health”. This has serious medical and cultural implications, witnessed in, for instance, how our society views a broken bone as a legitimate illness but depression as a character flaw. The dualist structure also helps explain why many complain that medical care is impersonal and mechanical. Jacques Kriel, a Professor of Medical Education at the University of The Witwatersrand in Johannesburg, South Africa, wrote about this in a 1988 paper: “In this reductionist framework, medical problems are analyzed by proceeding to smaller and smaller fragments - from organs and tissues to cells and finally to the molecular level. It should be clear that in this reduction, the holistic phenomenon of illness, the person who is ill, must inevitably get lost.”
With chronic illnesses, many of which include idiopathic pain, the dehumanized medical approach can cause frustration and unnecessary suffering. In a system that only searches for the biological reasons for malfunction, pain without a known physical source is doubted. This theme is explored by Professor Simon Williams and Professor Gillian Bendelow of the University of Warwick: “Pain needs to signify some bodily pathology in order to be considered ‘real’; and many chronic pain patients persistently pursue a ‘legitimate’ (or legitimating) medical diagnosis to justify the pain and to avoid the label of ‘psychogenic.’”
The delegitimizing of pain is compounded by the implicit biases that many doctors hold against certain identities, such as patients of color or women. Research has shown that the association between implicit bias and patient race is statistically significant in regards to pain management, drug prescription and treatment recommendations. One meta-analysis found that Black and African American patients were 22% less likely to be prescribed pain medication than their white counterparts. Data also points to the influence of gender norms on chronic pain management, largely through the stereotyping of men as “strong” and women as “emotional”. One study found that among men and women experiencing non-traumatic abdominal pain, women were not only 13-25% less likely to receive pain medication, but they had to wait longer for it.
Beyond the medical system, the lifestyle promoted in Western, and specifically American culture, is one that does not encourage treating the body kindly. We are marketed processed food loaded with additives, our culture pushes unrealistic body standards on women and men alike, and there is a pervasive overprescribing of medications. In the extreme, vulnerable populations are forced to prioritize work over their own bodily safety in order to survive. Our obsession with competition and productivity means “justified” abuse to the body and mind; we are told to put profit over wellbeing.
Indeed, in the U.S. and under capitalism in general, the emphasis of life and one’s purpose is making money, reaching your goals and having something to show for your hard work. This is also easily observed in the hustle culture that many of my educated American peers and I share. With so much to do in so little time, we often glaze through the days in a haze of work, school and clubs—checkbox after checkbox. We are taught to neglect and even batter our bodies to achieve perfection, be it through not sleeping to study for a test, not eating well because you’re in a rush or binge drinking to have fun.
The implications of this kind of lifestyle are clear, especially when viewed through a mind-body unity lens. Rates of anxiety and depression among college students are rising. Eating disorders are likely to begin during college years, often triggered by the added stresses of school. These are trends often repeated, if not exacerbated, in the corporate or professional world. There is little recognition to the root, institutional causes that exacerbate underlying mental health conditions or bring up brand new ones. This plays out similarly in the Western medicine system, where there is a greater focus on treating already existing illnesses—slap a bandaid on it, pop a pill—rather than a holistic, proactive approach that takes into account not only the body, but environment, social factors, identity and cultural contexts.
Understandably, if someone is experiencing a harmful biological reaction, the first order of business should be to do whatever it takes to quell that threat. In my own experience, some medications have helped me stay healthy. Still, our medical system and culture in general deserve a reckoning with how we treat our bodies and the problems that treatment creates and advances—for everyone, not only for those with chronic disease. The most ambitious change would be a cultural one, revising how we think about the mind-body connection and what a “successful” life means. Some less intimidating ones include, on the individual level: being more mindful of what we put into or do to our bodies, and on the institutional level, guaranteeing greater equity in access to healthy foods and fitness initiatives. And while these changes don’t mean a cure-all for every chronic illness, they are good ways to give patients agency in their treatment and healing.
Riding around on my bike that March day, the wind pushing softly against my back like an encouraging boost, I felt a glimmer of that peace and oneness. The Huron River glistened with afternoon sun. The moon was a stenciled dot in the deep blue sky; I could even make out the crooks, valleys and craters that line its exposed side. Thoughts about schoolwork, national strife and the pandemic quieted into the back of my mind. I felt like with each push up the hill, I was really getting somewhere—finally, it was me and my body, working together, like the moon and sun, just one pedal closer to unity. More than two years later, as I revise this piece with the Canarian sun biting on my back, they are still just as tightly bound together.
This piece was previously published under a different headline by The Michigan Daily on March 27th, 2021. It has been slightly reworked by the same author.
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