Making Amends with My Body: Chronic Illness and Body Image

By Tracy Naschek

Source:  @youmeempathy

“One of the most powerful things a woman can do is tell the truth about her life.” - Heidi Schreck

Quoting her own shirt, a close friend once told me that vulnerability is dope. This is a test of her theory.

When I was ten years old, I was diagnosed with Crohn’s disease and later Eosinophilic Esophagitis (EoE). For the past eleven years, I’ve not known how to speak frankly about my illnesses. This symptom x, that symptom y, especially that embarrassing symptom z. My difficulty articulating myself has bled into a reluctance to think critically about my body, one that is shaped and continually reshaped by so much trauma.

Ironically, when I’m in pain, my body is the sole focus of my attention. The mere articulation of how I feel is enough to turn the discomfort of nausea into vomiting. My pants have to be held below my waistline. The coolness of water bubbles from my esophagus to my abdomen, churning in my stomach and reminding me that digestion is a rough and agonizing process when one is privy to experiencing it. Food is the enemy, and the bathroom, my best friend. This is not a relatable pain that those without chronic illness can imagine by extrapolating a bad hangover or the stomach bug. This is chronic pain that my sick body imposes on itself, that, despite the most common question I get asked during a flare-up, “what do you think you did to cause this?,” occurs without immediate cause, without warning and without respite.

When I’m in pain, there is nothing but pain. Other people do not speak. Pain dissolves others into disembodied voices, whose cacophony is most annoying because I cannot fathom how it exists amidst the ubiquitous force of my pain. There is nothing and no one that can steal my attention or energy because it is all diverted to the gut-wrenching, who-knows-when-it’s-ending pain.

Finally, when I’m in pain, I get sad and often cry.  If I’ve been sick for an extended period of time, sometimes the sorrow is existential. I’m cursing the god I don’t believe in for burdening my life with a chronic illness. Sometimes I cry because my body severely weakens and I realize how out of control of it I am, a concession that runs counter to the mainstream messages we receive about our bodies and our “health and wellness.” Sometimes I just cry because the pain is unbearable and I’m angry and upset and all logic falls flat.

Even when I’m not in pain, a lingering worry accompanies me. Whether it stems from catching the latest flu strain due to my medically weakened immune system, an ironic requisite of my health, or a simple lack of energy, the possibility of pain always lingers close by. Many of my meals end with what is an unalarming fullness for many, but is for me an inextricable sensation from the one that signals the onset of pain. A subtle nausea that may be a manifestation of bodily anxiety, an ache that will subside, or a flare-up that will curl me into fetal position until the nurses pump morphine into my veins for relief.

There are still other times, when I feel entirely unencumbered by the burden of chronic illness. In “Sick Woman Theory,” Johanna Hedva calls these times, “blissful moments of oblivion [which] are the closest thing to a miracle that I know.”   

During a recent flare-up of Crohn’s, something shifted. It was April and I was in the final month of my junior year of college. I got very sick, a flare the severity of which I hadn’t experienced during my first two years at school. The details of this episode remain dizzying and lethargic, always difficult to describe after the fact since malnourishment takes a toll not only on my body but also on my psychological state. I wrote the reflections above during another recent flare, without which timing I wonder if I could have written anything at all.

By the end of this long, stomach-growling, bedridden week, I was feeling slightly better. Finally able to stomach some white rice. When I slid out of my high-rise dorm bed, I lifted my shirt and looked in the full-length mirror on the backside of my door. I smiled.

I, fucking, smiled. I smiled because the student’s annual trip to Myrtle Beach at the end of the semester was just a few short weeks away, and underneath my shirt a thinner, flatter stomach replaced whatever “rolls,” or more precisely extra skin, five to ten pounds added to my body.

I had done it. I had lost the extra weight I had been meaning to lose, and just in time for beach week, as long as it would stay off for the coming weeks during which my regular appetite might resume.

However, in the time after the smile, the congratulatory hip shake and the worry that an increased appetite might welcome back the extra weight, I realized how warped the image of my ideal body was. Though it was not only warped; the body I strove for was a sick one, my sick one. So at the same time that my flare-up caused me immense physical and emotional pain, by the end of its torture it also produced a body in which I was more confident living inside of and showing off at the beach. And I praised it and I cursed it at the very same time. What kind of a relationship is this with one’s own body?

Feminist author, Naomi Wolf calls these five to ten (to fifteen) pounds that I aimed to lose “the One Stone Solution.” In her book, The Beauty Myth, she describes her theory: “One stone, the British measurement of fourteen pounds, is roughly what stands between the 50 percent of women who are not overweight who believe they are and their ideal self.” Simultaneously, she recognizes the caveat:

“That one stone, once lost, puts these women well below the weight that is natural to them...But the body quickly restores itself, and the cycle of gain and loss begins, with its train of torment and its risk of disease, becoming a fixation of the woman’s consciousness. The inevitable cycles of failure ensured by the One Stone Solution create and continually reinforce in women our uniquely modern neurosis.”

Wolf’s words illuminate for me a cycle that I have incorporated into my own body without an awareness of its gravity and prevalence. That word, disease, stings the most. When I read her words, I realize that my distorted body image and resulting self-imposed weight management is one that may result in just as much harm and even carry the same devastating label as my already-existing chronic illness.

Although my reaction to my recent flare-up illustrates an interruption to a habit I had long become accustomed to, there was a time after my diagnosis during which I deeply revered food. Carolyn Lazard begins “How to be a Person in the Age of Autoimmunity,” with “the last meal [Lazard] ate without being afraid.” When my gastroenterologist diagnosed me with Crohn’s disease at ten years old, it had been about seven months since I had eaten without being afraid. Despite the numbness I felt in my daily life leading up to my diagnosis, there still arose a sharp burn of anxiety in my chest whenever the first scent of dinner drifted from the kitchen into my bedroom, worsening when my mother announced it was ready. However, when I finally introduced an anti-inflammatory drug, Pentasa, into my body, I regained my appetite. I was also taking other anti-inflammatory medications, Celebrex and Prednisone, the latter of which increased my appetite either way, but I still recall revelling in this deeper appreciation for food I developed in the wake of such a traumatic relationship with it. The unexplained symptoms of my illness had placed me on the brink of starvation, which in hindsight truly felt like a near-death experience, so when these medications reduced my pain and restored my appetite, I understood the act of eating food as what revived me, so to speak. I remember food most fondly during that time in my life. Food in its purest form, not as an evil dumper of calories into my body, but as the most necessary nourishment without which we all very literally die.

In that early stage of my life, I wasn’t obsessed with losing weight at all. Once I regained my appetite, I focused on gaining weight, shoving down Ensure shakes to supplement my nutritional intake because now the doctors understood my body didn’t absorb nutrients as effectively as other bodies did. My doctor-ordered diet included oreo cakesters, penne alla vodka and a variety of “unhealthy” foods because my forty-pound body required calories as much as anything else and because these simple carbs were often easier to digest than the latest fiber-rich whole-grain and nut bar that Health Experts™ claimed would add five years to your life.

I got my period my freshman year of high school, which is a true feat for someone with my illness and the marker of my increasingly functioning body as a result of medication, dietary restrictions and lifestyle changes. But somewhere around this time, when the pressure to slide into tight dresses, to make oneself sexually appealing, to make oneself a beautiful young woman increased, my eating habits shifted with a new bodily awareness. I lost my near-death appreciation for the nourishment and taste of food, replacing esteem with distrust because of what it could do to my body. And so began on-and-off dieting especially preceding holidays and big events, tracking calorie intake and output on apps and accusing my friend’s leftover offerings at lunch as ploys to make me “fat.”

However, I wasn’t the only one dieting, shrieking at friends and sucking in my stomach to exhibit my “best” body in a tight dress. It was all of my friends. It was the parents and teachers. It was normal. This obsession, often characteristic of eating disorders, was everywhere I looked. Though the amount of food I ate (practically nothing) before I was diagnosed with Crohn’s and EoE was too little, it didn’t seem like healthy people, particularly girls and women, were interested in eating much more. I grew to learn that living in a healthy woman’s body meant hating it too.

The National Eating Disorder Association (NEDA) cites research that finds 40-60% of elementary school girls (ages 6-12) are concerned about their weight or about becoming too fat and another study, which shows that over one-half of teenage girls and nearly one-third of teenage boys use unhealthy weight control behaviors such as skipping meals, fasting, smoking cigarettes, vomiting, and taking laxatives and that these behaviors can predict future eating disorders. In fact, national surveys estimate that 20 million women and 10 million men in America will have an eating disorder at some point in their lives. While thinkers like Naomi Wolf and Susan Bordo once understood eating disorders and weight management as exclusive to white, middle- to upper-class women, Asian, Black, Hispanic and Caucasian youth all report attempting to lose weight at similar rates, although among Indigenous American adolescents, 48.1% report attempting weight loss. Additionally, NEDA’s research shows that Black and Latinx LGBs have at least as high prevalence of eating disorders as white LGBs. These statistics are especially important in light of an American beauty standard that values white, thin women and hypermasculine men, which can further exacerbate negative body image and related illnesses for bodies that do not conform to this standard. Additionally, systemic racism can exacerbate these body image issues and illnesses. For example, one study found that people of color with self-acknowledged eating and weight concerns were significantly less likely than white participants to have been asked by a doctor about eating disorder symptoms. Another obstacle is body size itself. As Corissa Enneking reveals, doctors effectively congratulate her and other fat women on their eating disorders. Ultimately, these statistics illustrate a deep hatred for and discomfort within our own bodies, across a variety of bodies.

All of this information leaves me at a crossroads. On the one hand, my body suffers from physical illnesses, the concomitant emotional and physical pain of which are inevitable, although certain healthy behaviors and diets (in conjunction with medication) help remedy their severity. On the other hand, I find myself not quite suffering from an eating disorder, but on a spectrum that still classifies my body image and resulting eating habits as somewhat distorted and definitely obsessive. (I call this a spectrum not to belittle the severity of these illnesses, but to associate this high and increasing rate of disordered eating with widespread negative body image.) On this side of the road, I am in good company, although the general consensus on how we treat our bodies leads to a weaker body, one expelled of the nutrition and energy I’ve worked so diligently to attain. However, I now recognize the only way in which I will be able to uphold this ideal body is remaining in my sickest state. More than once, I’ve relied on flare ups or bad days or colonoscopy preps to shed the few pounds that Wolf recognizes my body is constantly trying to gain back. And so I know that I have to relinquish this obsession in order to respect the chronically ill body that I’m in. Yet, making an intentional decision is only half the battle. I can’t simply expel myself from this obsession by deciding to. Although deciding to, and deciding to do it again each day and every subsequent day that I can feels like a good first step.

It also comforts me to understand that what I once viewed as my uniquely perverse desire, my semi-unconscious wish to remain in my sick body, was not unique at all but part of a larger picture of shame towards one’s own body. Both those who do and don’t embody the American standard of beauty find fault with their bodies, sometimes to the point of disease, because, as Wolf’s “One Stone Solution” suggests, the ideal body is an elusive goal rather than an attainable figure. That's why we need some other malleable mentality towards our bodies. Some other measure of bodily merit that includes difference sizes and shapes and colors and gender expressions, removed from the Superhero and Playboy Bunny bodies some of us are desperately chasing because we have been conditioned to do so. A new paradigm is required in order to relinquish the shame in our embodied existence.

The body positivity and body neutrality movements are more recent attempts to disrupt widespread negative body image and accompanying illnesses. While I find value in both movements, I also find both to be incomplete, half-solutions. On the one hand, body positivity is an important and potentially liberating rebellion against a fatphobic healthcare system, the impossibly thin beauty standard set by Victoria’s Secret models and a national media more outraged by a plus-size mannequin in the UK than black bodies dying for democracy in Sudan. However, I’ve always found loving my body to be too fleeting of a goal and therefore found body positivity to be too aggressive in its optimism. Some days I simply hate my diseased body. This is not to say that we shouldn’t aim to love our bodies, but that, for me, love feels too ambitious of a starting point. Meanwhile, body neutrality is more interested in what bodies do-- exercise, travel, hike, get from Point A to Point B-- rather than how they appear. Body neutrality displaces appearance with activities and achievements. However, this mentality does not hold up within a body like mine that is subject to a perpetual betrayal, one that is just as likely to prevent you from getting from Point A to Point B as it is to move you there. Another aspect of body neutrality-- dismissing the thought of one’s body as often as possible-- seems misguided in its inattention to one’s body and altogether impossible for people of color and people with any physical disability-- invisible or not.

In “I Can’t Stay Body Positive When My Body Is In Pain,”  Jolie A. Doggett writes, “While there’s no right or wrong way to be body positive, there’s a lot of focus on loving how our bodies look and not enough focus on how our bodies feel.” An attention to how our bodies feel is precisely what is missing from both of these proposals. My idea is not to replace one standard of a perfect body for a different one. Instead, I suggest dispelling appearance as the measurement of an ideal body. An ideal body, in this sense, is one in which we feel good and maintain generally healthy habits (which does not mean eliminating pizza and cookies by the way). Whatever that body looks like is almost irrelevant. For me, I see it as a transition from obsessing with appearance or ability to attuning to my body’s pain, desire and energy levels, which feel like better guides to maintaining a healthy body and relinquishing my desire for a thin one. Replacing my body’s attention to weight with an attention to health is different than always trying to love its appearance, than attempting to ignore its existence, than aiming to be the thinnest I can be. Honoring the needs of my body means rekindling my near-death relationship with food. That freedom to eat in order to fill myself, as opposed to eating specifically to maintain a thin figure. Healthy, for me, often means choosing (gluten-free) pasta over salad because fiber is difficult for my body to digest. Leading with my body also means allowing it to regulate my schoolwork schedule, my commitments to other people and the time I inevitably need to rest. Finally, it means that some days I never leave my bed, other days I strut down the beach in my favorite swimsuit and most days I find myself somewhere in the middle, without feeling guilty about which day I’ve experienced. This shift is one that may allow me to find solace not in the achievement of a specific figure, but in renouncing the pursuit of an exhausting paradox, one in which my body is either sick and shapely or a healthier eyesore. In this way, I can foster respect for my body’s boundaries as I strive to love whatever my resulting figure is.

An important misconception to dispel in order to truly honor this shift is that health and weight do not directly correlate, so that thinness is not necessarily a measure of health. In fact, Michael Hobbes cites a study in which one-third to three-quarters of people classified as obese were determined to be metabolically healthy as well as a 2016 study, which suggested that unfit skinny people were twice as likely to develop diabetes as fit fat people. However, what’s also important to understand is that healthy food is not accessible to everyone. The rising price disparity between healthy and unhealthy foods means that only certain people can afford a healthy lifestyle. People with lower socioeconomic statuses will have to be granted access to healthier options because everyone deserves access to nutritious food.

One of the most important lessons my illnesses have taught me is my own lack of control not in the way I treat my body, but in the way it responds to treatment, in terms of pain or lack thereof and in terms of weight, ideal or shortcoming of my desire. Controlling its specific weight is something I am trying to relinquish. I live inside my body and want to begin to expunge the hate I have developed towards and within it. I also want to alleviate the shame and silence around distorted body image and disordered eating. In Naomi Wolf’s own reflection on her eating disorder, she decides, “In our interpretation of the damages done by the beauty myth, it is not yet possible to lay blame anywhere but on oneself. I can say finally, for myself at least: at thirteen, to starve half to death? Not guilty. Not that child. There is certainly a charge of guilt to be made, long overdue. But it doesn’t belong to me. It belongs somewhere, and to something, else.” It is not on sufferers of eating disorders or those who have traumatic relationships with their body to apologize. And that is why we do not have to be ashamed. The guilt lays elsewhere. When I think about all the time and the energy that I wasted on hating my body, it exhausts me. It angers me. It upsets me. But with this knowledge and in solidarity with so many others, I can begin to lay down the weight of negative body image in order to attune to what my body truly requires as a chronically ill one.