What it’s like to live with chronic pain and illness

Sickness and pain are universal experiences that are part of being human. But most people experience them as something passing that happens every now and then over a lifetime. But others like myself experience it as a daily fact of life that changes in degree but is always present. Among the challenges that plague those of us who live with chronic pain and illness, one of the most soul crushing is the pressure to stay silent and not express the suffering we feel. Social norms and responsibilities, the desire to be useful and productive, to have fun and be positive around others — these pressures cause us to practice a brutal yet banally systematic suppression of negative emotion. It’s accepted to complain to your friends when you break your leg or get the flu. But when you are suffering every day, you cannot complain out of fear of burdening people, casting a shadow over their happiness. No one wants to be seen as broken. This emotional self-mutilation hurts, too, so this is my attempt to practice openness.

Like anyone else, chronically ill people have good days and bad days. But when you have chronic pain or illness, “good” days are better described as “less bad” days. This means that if you ask a chronically ill person if they are feeling better, and they say “yes, thank you,” this doesn’t mean they are feeling healthy or well in the sense that you understand it. In most cases, it means they are back to some kind of status quo where they are somewhat able to continue managing their daily life. They are at a point where they can muster the strength to hide their pain (again).  They may be feeling better, but they are still hurting.

The longer a person suffers, the longer they practice emotional self-suppression. It’s a refined art and an expertise that is completely invisible to the outside world. In fact, sometimes chronic pain sufferers may be accused of being weak or overly sensitive: we might sometimes have more trouble coping with physical or emotional stress than the average person. However, this is because getting up in the morning and going about simple daily activities can be a monumental challenge in itself. That’s why it is so hurtful and depressing when loved ones or doctors are frustrated and disappointed with us: we wish our daily triumphs were recognized, but usually it’s a saga that plays out privately in our own minds.

While a lifetime of suffering trains chronic patients to become experts in hiding pain and acting as if nothing is wrong, no length of illness enables us to feel the pain less or to get used to it. Pain is pain, and the body hurts whether you experience it for a moment or for a decade.

Chronic pain and illness often means having a tumultuous love/hate relationship with life. My bad days often lead me to question the value of living, but my good days fill me with a kind of hope and joy that I think it’s hard to understand if you are not constantly in pain. It’s hard to describe the glorious feeling that comes on days when we can think, I’m hurting like hell, but today it’s okay, I can get through this. We appreciate the little things in life very deeply because they are often fleeting — here now and gone in a flash. Simple things like breathing, moving, hugging, become precious. Pain is our enemy, but also our teacher, our secret self, lodged in a corner of our heart like sand in an oyster.

Death may often be on our minds, and we may refuse to live and work as though it were a distant fiction that only the elderly need consider. If this is the case, please accept our choices. Not everyone is cut out for the 9 to 5 corporate job; the spouse, two kids, financial responsibility; — nor is everyone cut out to party all night, jump out of airplanes, go hike across a continent. Not everyone can muster the will and energy to live the life that seems normal, healthy, meaningful, and respectable to those around them.

Instead, sometimes we have to cry, let you down, break plans and promises; make unexpected choices, say socially inappropriate things at the moment the feeling rises; sometimes we have to live a life that looks a bit ugly and haphazard from the outside, but if you are flexible and open, listen and accept whatever we need to do to get through the pain and come out on the other side, you help us to live authentically: a fully, simply human spirit, who conquers the world on good days.







Mixed Baby

“What are you?”

This question is so familiar to me that I have a mental trove of stock answers, ready for every occasion. Sometimes it is politely prefaced with a “I hope you don’t mind me asking, but…” or a “I’m sure you get this all the time, but I was wondering…” but no matter how it’s phrased, I recognize the question from a mile away and have an answer ready before the end of my interlocutor’s sentence.

What this question means is something like this: “Your appearance doesn’t conform perfectly to any of the (scientifically unfounded) racial groups that humans feel compelled to sort each other by. Please explain.”

Depending on how I feel and who I’m talking to, my answer could be something like “I’m American”, “I’m a teacher”, “Do you mean my parents? Well…”, “I’m multiracial”, “I’m Asian American”, or “That’s complicated.”

Before I go further, I’d like to state that if you’ve ever inquired curiously about my heritage, I probably didn’t mind. I am lucky to say that seriously unpleasant experiences surrounding this question have been few and far between.

Of all the people who have interrogated me about my identity, I am by far the worst offender. In this article, I’ll share a bit about this experience of trying to find myself in a reality where racial categories are everywhere. I hope it provide some fuel for important discussions about race and emphasizes the importance of multiracial voices in these conversations.

Growing up with mixed parentage means asking yourself this question from day one: What am I? I learned early on that there are many words available to describe me and that my identity was not a simple thing: biracial, multiracial, half-Asian, half-white, half-breed, mutt, mongrel, hapa, mestiza, exotic, East meets West, Eurasian, the best of both worlds, genetic jackpot, mixed baby.

As a child, I went through phases of preference among this dazzling array of descriptors that I had heard used about me. One week I’d try on “half-Asian” for size, then the next week I’d learn a shiny new one like “mestiza” and wonder if that fit me better. No matter how I sometimes enjoyed these odd words, there was one thing I was always sure about: being “half” of two things doesn’t buy you group membership into either one. I felt like a perpetual in-betweener.

The fascinating thing about conceptions of race in human society is how much confusion, suffering, and general mayhem can be caused by something that has no scientific biological basis. Sociologists recognize race as a political and social concept. It is only related to physical appearance insofar as societies that create it choose to delineate difference. Yet this illusory thing shapes our world in so many ways. In my case, it created two half-people out of one whole person, and as it turns out, “white me” didn’t always coexist peacefully with “Asian me”. The global hallucination of race and the resulting interpersonal conflicts have been the subject of many a treatise, but the intrapersonal struggles often faced by “mixed” people are just as strange.

I grew up in a conservative, evangelical Christian environment where most of my playmates from an early age–with the exception of my cousins–were white. Despite living in a diverse multicultural community, the white, middle-class evangelical family still represented the standard American experience to me. My first “best friend” I can remember was a skinny, athletic girl named Josie. She was funny and confident, and I followed her everywhere loyally. We played whatever games she wanted to play, and usually I was the loser. But I lost gladly: I was proud to be Josie’s Best Friend. Even at that age, I remember admiring her long blonde hair, bright blue eyes, and complexion so pale you could see her veins. Everyone in school thought she was pretty like a princess, and it made total sense to me. After all, Sleeping Beauty–a common little girl definition of fairy tale beauty–looked a hell of a lot like her. This sense was underscored by my annual visits to Asia, where pervasive heat, dirt, poverty and disease contrasted starkly with the white upper-middle class lifestyle permeating my American childhood. Sleeping Beauty and her white ilk were like royalty to me, and I knew I wasn’t like them. But even at that age, I sensed I was a step closer to that privilege than my cousins. And like many little girls, I too wanted to be a princess.

I set out to engineer myself into a pretty girl. The most crucial thing to be remedied was my nose. At that time I was convinced that it was big and flat, which from my point of view was clearly ugly. Lacking people of color as role models I saw this fact as self-evident, and sat for hours perusing old photos of my parents and making bizarre genetic predictions about how my nose might turn out when I was older. I knew what I wanted, and that was Josie’s nose, a “white” nose. A world of confidence and popularity awaited me upon achievement of such a prize. Not having the patience to see if nature would bless me by “improving” my features with age, I decided to give it a little help the only way I could think of: clothespins. When the grownups were out, I’d sit at home with a book of old photos and several clothespins on my nose. The bone and cartilage ached (my nose is still sensitive from the abuse), but I had heard pain was the price of beauty. Despite my efforts, the kids made fun of me when I tried to be Rapunzel for Halloween. “It looks stupid on you.” So I stuck with Esmeralda and Pocahontas in the following years.

As I grew older and my social experiences broadened, my single-minded admiration for whiteness dissipated. I have to admit that Disney princesses like Pocahontas, Esmeralda, and Mulan had a positive effect on me. And once I arrived in middle school, I found for the first time in my life that Asian American girls were at the top of the social hierarchy in my California city where almost forty percent of the population is Asian. Kim Tran, a Vietnamese American girl with a perfect sheet of shiny black hair, was the girl every 7th grade boy at my school dreamed of dating. She wore cute girl-next-door clothes in pastel colors and had the perfect bubbly handwriting to match her personality. And then there was Anna Gonzalez. She was a bossy, tan Filipino American girl who wore short shorts, platform shoes and form-fitting shirts in loud colors. Her hobby was getting sent to the principal’s office for breaking dress code and apologizing with a wicked smirk. It was then that my social standards of beauty were exchanged and I felt an enticing pull towards Asian-ness. After my failure to pass as a normal little white girl, I determined to find acceptance as an Asian Girl.

Operation Asian Girl was as misguided as the first. I agonized about how my hair wasn’t black and wasn’t perfectly straight. I saved up pocket money to go to the Japanese stationary store and buy mechanical pencils and gel pens with cute little animal characters and erasers shaped like food items: all the cute Asian girls had those. I practiced handwriting for hours on end to transform my jagged psycho scrawl into loud, bubbly characters. Finally, after much drafting, I adopted a cute nickname ending in -y (or -ie, depending on my mood). To this day it amazes me what my concept of ideal Asian-ness was back then: a superficial, essentialized mish-mash of Japanese and Korean media and culture that could be encapsulated by a perfectly straight black hair and Anime-style cuteness. All of us Asians and part-Asians in the middle school aspired to this regardless of heritage; I was vaguely aware that my Southeast Asian origins were not the coolest on the Asian hierarchy, but tried to capitalize on them during this phase in what ways I could. In the end, I still felt like a impostor, someone trying to be something I was not. A Chinese boy I had a crush on–who was good friends with popular girl Kim Tran–took to making fun of me at every chance he got. “It’s funny how ugly you are,” he said. “If you were a whore, I bet no one would fuck you even for a nickel.” Kim would glare at him and fake-punch his arm. “Oh stop it, Alex.” Then they would laugh and go on with their day. His words hurt, but I still had a crush on him. He was cute and funny, and I let him convince me it was all a big joke. It took me a while, but I eventually realized I’d never be a part of this group.

Fast-forward to adulthood. I’ve learned over the years that it’s not important whether or not I fit into any particular racial or ethnic group. I can fit into multiple groups, or into none at all. When it comes to the hallucinatory yet vital lived experience that is race, we have to allow for a bit of paradox to exist. After living abroad, I’ve also realized how people’s perceptions of my race (and race in general) differ dramatically depending on where I am, further underlining its unfixed nature. In some places, people identify me as white, in others as Asian, in others as mixed or ambiguous, and like anyone else, I gain or lose privileges depending on the situation. Although I don’t identify as white, I recognize that I benefit from white privilege insofar as some people identify me as white and accord me those privileges.

Despite being able to fit under multiple labels, no single label can capture my experience. What I think really distinguishes my multiracial experience from someone who identifies–or is largely identified by the world–as monoracial (whether it’s white, Black, Brown, Asian or whatever else) is that my identity is so frequently interrogated, discussed, and dissected. And although my identity can be fluid, I don’t get to choose how people view me, and oftentimes (although not always) white people mark me as non-white while non-white people mark me as white, creating a dizzying sense of perpetual non-belonging. Furthermore, people around me tend to have strong opinions about what I look like (i.e. what racial group I most clearly belong to) and assume that their perceptions are universal, making me feel pressured to accept or conform to identities I didn’t choose.

Ultimately, if you get nothing else out of my story, I want you to know that although “multiracial” people can end up categorized in one group or another at different times and places, the sum of their experiences can be quite different than “monoracial” people of those same groups. These terms, just like the concept of race itself, are mirages with no basis in science, but nevertheless shape our realities, and in mixed race people, these concepts can war within a single person. That is why I hope discussions of race in society will incorporate more thoughts from mixed race people, ultimately leading to a more nuanced understanding race for everyone.

I’ll close this post with the Bill of Rights for People of Mixed Heritage, by Dr. Maria Root, a clinical psychologist and educator of mixed Filipino-American heritage.

I have the right:
-not to justify my existence in this world
-not to keep the races separate within me
-not to be responsible for people's discomfort with my physical ambiguity
-not to justify my ethnic legitimacy

I have the right:
-to identify myself differently than strangers expect me to identify
-to identify myself differently than how my parents identify me
-to identify myself differently than my brothers and sisters
-to identify myself different in different situations

I have the right:
-to create a vocabulary to communicate about being multiracial
-to change my identity over my lifetime - and more than once
-to have loyalties and identify with more than one group of people
-to freely choose whom I befriend and love