K H A N H . N G U Y E N

pain points

9/15/2024

Pain is the shattering of language.

That is what Elaine Scarry wrote in her book, The Body in Pain. According to Scarry, pain is a visceral sensation that is almost impossible to communicate: its “resistance” to language creates its “unsharability.” The violent power of pain is that it combats communication. It strips away the potential of words to bridge gaps and facilitate understanding. Pain can be approximated, alluded to, perhaps explained, but it can’t be fully conveyed. While it is possible to empathize or imagine, it is difficult to truly understand what pain someone else is going through. Not just difficult: near impossible. “To have great pain is to have certainty,” Scarry concludes. “To hear that another person has pain is to have doubt.”

Julie Woods, designer and researcher at the RISD Center for Complexity, agrees. “Pain is such a solitary experience,” she says. “There’s absolutely zero way for any human being to absolutely know with confidence the pain experience of any other human being.”

One of the projects Woods works on is in collaboration with UCSF, helping patients for whom English is not their preferred language to accurately communicate their pain to doctors. She is investigating, among other things, whether the standard American tools of the 1-10 pain scale and Wong-Baker face pain scale have cultural relevance to patients from other cultures. She is interested in whether similes, metaphors, and idioms can serve as a more useful means to facilitate this communication, allowing patients to express themselves rather than conform to a medical model.

The pain of others is not valued or perceived equitably. People in the minority, who are already less likely to be believed due to persisting biases, find it even more difficult to communicate their pain. This includes people who do not speak English as well, people who identify as queer, and people who were born female or identify as women. The same barriers of discrimination and disenfranchisement that disincentivize them to speak up in general compound the already-fraught communication of pain.

As Scarry continues: “The relative ease or difficulty with which any phenomenon can be verbally represented also influences the ease or difficulty with which that phenomenon is politically represented.” It is already hard for pain to be taken seriously: and imagine how hard it is when the person in pain is already someone with lower political power.

Women are misdiagnosed, mistreated, and misunderstood when in pain. Dianne Hoffman and Anita Tarzian’s scientific study The Girl Who Cried Pain analyzes why women report more severe, frequent, and longer-lasting pain than men, but are treated less rigorously. Female patients were more often perceived as anxious than in pain, and their pain dismissed as psychological. Women were more likely to be given sedatives... and men to be given pain medicine. It is a long journey to treatment, much less to being believed. Hoffman and Tarzian cite studies that state chilling facts: “of chronic pain patients who were referred to a specialty pain clinic, men were more likely to have been referred by a general practitioner, and women, by a specialist” and “of 188 patients treated at a pain clinic, the women were older and had experienced pain for a longer duration prior to being referred to the clinic than the men.”

During my Masters in Design Products at the Royal College of Art, I conducted a design and research project regarding chronic pain that eventually focused on women in pain. I researched and interviewed female chronic pain patients, specifically focused on those with endometriosis and fibromyalgia, in order to understand their stories and their experience in medicine. Endometriosis is a chronic condition in which the uterus lining grows outside of the uterus, causing pain during and outside of menstruation. 1 in 10 women are affected, and treatment includes surgeries but no real cure. Fibromyalgia is a condition of chronic pain fatigue that affects 1 in 20 individuals, mostly women, and has no cure.

“The problem is you can’t put pain on trial,” writes fibromyalgia patient Amy Berkowitz in her book Tender Points. The title of the book refers to the way that fibromyalgia is diagnosed: a doctor presses on 18 tender points throughout the body, and if the patient feels pain in 11 of them, this leads to a diagnosis. Of course, this testimony-and-trust-based diagnosis depends on whether the doctor believes that the patient is truly feeling pain when they say they do. An almost imprecise measurement to a condition that already has murky roots of cause. (Some theorize it is triggered by past trauma, but there is no documentation of what exactly is the onset.)

Hoffman and Tarzian summarize that women were frequently thought to be equipped with a “natural capacity to endure pain.” There is a societal normalization of pain for women – period pain is simply expected every month – and an expectation that women simply have to just deal with it. This can partially explain why, according to the NHS (the United Kingdom’s National Health Service), endometriosis takes an average of 7.5 years to diagnose.

For one endometriosis patient I interviewed, Belen, the diagnostic process took six painful years and four doctors before she had an accurate diagnosis. Her own father was one of the doctors who did not initially believe her pain was “real” when she came to him for help.

“I cried from joy when I first got that diagnosis,” confesses Belen. “Finally I could call that pain something. It wasn’t just my imagination. I could actually call it, label it, and say yes, it exists. Because for many years, I wouldn’t believe my own pain.” Belen said the interview itself was cathartic: simply getting the chance to tell her story from beginning to end, to a sympathetic listener, was an experience she had never had before.

Of course, a diagnosis isn’t the end of the pain journey. A way to label the condition brings forth hope, community, and understanding, but doesn’t magically erase the condition. For many chronic pain patients, the reality is less so treatment and more so a lifetime of pain management. Instead of having real solutions for these painful medical conditions, often, patients are given pills as quick fixes. Endometriosis patients get prescribed birth control pills, and fibromyalgia patients get prescribed antidepressant pills. Both of these pills come with a whole host of “side effects.” These “side” effects that are really just effects – that may only make the pain worse, or shift into a different type of pain entirely. The NHS website lists 13 “standard” effects for the antidepressant pills and 12 “serious” effects for it, which include, ironically, thoughts for suicide. For the various birth control pills, the website lists 14 “standard” effects and 12 “serious” ones, which include, also ironically, vaginal pain and bleeding.

The “side” effects of these pills include the very symptoms for which they are meant to treat.

No small wonder why many chronic pain patients often turn to alternative types of medicine, such as acupuncture, yoga, and mindful meditation. “It helps you to be in touch with your own body,” explains Linda, an acupuncturist who treats many chronic pain patients. “If you’re in a still room and you’re being pulled in every direction, it helps to ground you.” Yet these forms of treatment aren’t counted by most Western measures, and patients have to pay out of pocket for them.

Problems at every turn: pain is not believed, a description of pain doesn’t always lead to diagnosis, diagnosis doesn’t always lead to solutions, and solutions don’t always lead to change. Often, chronic pain patients have to live with worsening conditions for the rest of their lives. More than often, these patients are women or other minorities.

Who is to blame here? It is not that doctors and nurses are callous and do not care about their patients. It is unlikely that medical professionals join their profession without empathy for humankind and the desire to truly help. However, with fifteen minutes or less to see and diagnose a patient, and burnout and dropout a key problem for medical professionals – especially post-pandemic – it is likely that facts, not feelings, are brought to the forefront. There is a gap between the way that patients express themselves, in anecdotes and sensations, and in the way that doctors need to codify conditions, in medical terminology (and, in the United States, in insurance codes). In addition, this so-called “factual” terminology can be biased. Medical textbooks disproportionately feature male anatomy and male conditions. The system is not designed with half of the population in mind. Half, therefore, is left unserved.

The design that came out of this research, pain points, used rope as a way to visualize pain that is usually chronic and invisible. Taking a subset of the words from the McGill Pain Questionnaire, a toolkit of cards was created, aimed to help patients communicate their pain to medical professionals. The project explored how to deliver agency back in the hands of women as experts on their own personal medicine by equipping them with a toolkit and vocabulary to communicate their often unacknowledged pain.

While doctors are the experts in medicine, patients are the experts in their own personal medicine. They know their medical histories: what works for them and what doesn’t. The ideal interaction should not be a one-sided information flow but rather a two-sided information exchange, where patient and doctor collaborate to achieve the best possible outcome. Patients should be able to regain agency of their health and wellbeing. After all, we only get one body.

In the breakneck way that most practices are conducted, this ideal of patients being able to bring the vocabulary cards and toolkit into a consultation and communicate with them often cannot be realized. However, there is still opportunity for the cards to slot into patient lives: at home where they can explore their pain at their own leisure, in the waiting rooms where they can take the chance to prepare for the conversation, and at pain clinics where chronic pain patients are dedicated to longer amounts of time with dedicated pain professionals. This doesn’t fully solve all the problems listed when it comes to the burden – and burden of proof – of chronic pain, but it is one tender step.

Since exhibiting pain points, my patient advocacy journey brought me to The Patient Revolution. Founded by Dr. Victor Montori, it is a global community of “care activists” that consist of medical professionals, researchers, designers, patients, and advocates who are “dedicated to transforming healthcare from an industrial activity into a deeply human one.” I took the course offered and eventually became a Fellow. The community encourages its members to participate in mini-revolutions to enact change against a very industrial medical system, making it more humane and kind. That mini-revolution can be as simple as going to your doctor and pushing for a more equal, two-way conversation, slowly changing that paradigm one conversation at a time. Or: it can be as simple as taking a stand to better understand your own body.

“You are the only one that can understand your body,” Belen reflects. “So next time you go to the doctor, they can tell you things, but you first need to understand your own body.”

Too often, this issue is ignored or brushed aside. We need to change the way that all patients – not only minorities, not only the chronically underserved, not only those with chronic pain – are treated; these population groups feel that even more deeply. That change can start with giving every patient more agency in the wider system.

Let’s press on the pain points. Let’s see them, hear them, feel them.

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drowning

8/19/2024

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My first memory of the waters of Vietnam is drowning.

I am six, the first time we visit Vietnam after my family left it years earlier to move to America. Like fragments of sea glass and shell on the beachfront, I collect what I recall from the time. My leopard print bathing suit, new. The minivan my cousins rent to drive us to Vũng Tàu from Sài Gòn, when it is more common to have motorcycles. My parents with a giant black buoy – do I really remember that? Or is that a false memory I’ve invented after seeing the photograph of the three of us, mẹ holding the buoy against her thigh, ba laughing as I run up ahead along the sand?

As a writer, my job is to make things up. I invent stories about fictional characters in my spare time, and I make up stories about the people I pass on the street, too. So I can write about the feeling of the waves crashing over me as I am pulled underwater, the aching hollow burning sensation of my throat as I scream for help, the relief at finally being noticed and rescued. Yet I don’t know if I remember that, or if it is simply the way that I write the story in my head, after.

What is memory, if not the act of rewriting? Psychology suggests that every time we remember something, we are rewriting that memory, and so the memory changes: water against stone, sand to glass. Smoothing and reshaping every time. I begin to wonder how we can even trust ourselves. Or if it is better not to remember things at all, so that the memory can be conjured as pure as possible, in a moment when it is truly needed. And when would that moment be? On the verge of death?

I am too little to have my life flash before my eyes, that moment in the water when the tide nearly takes me. I don’t know if I remember drowning – but my body certainly remembers the fear of it. Two years later, I am enrolled in summer swim lessons with my cousin at the YMCA, and get nothing out of it except for a healthy dislike of chlorine. My cousin swims easily after the lessons, and I learn to dread the pool. Freshman year of high school, when my P.E. class has a swim unit, I pretend to be on my period so I can get out of it. Yes, I am on my period… for three weeks. So what? Summers by the community pool, I stay on the side where the water can only get to my shoulders. Or better yet, out of the pool with a book. I do not go anywhere near the deep end, much less open ocean. Unfortunately, I grow up in California, so I am not spared the beach, though I go layered with healthy doses of sunscreen and dislike. Over many summers, I muddle along, somewhat learning to kick back and forth but never really a strong swimmer. I can do without, I think.

Then I learn that a requirement of graduating my university is passing a swim test.

How cruel. Maybe I just will never graduate. Could they possibly make us do that? But it is true: the week before freshman orientation, everyone has to take the swim test – or opt out and take the swim P.E. It is a way for MIT to make sure that all their students graduate with an important survival ability, and yet for me, it feels like the worst thing on earth. I will take my chances when the time comes, so long as I don’t have to face my fear now. Unfortunately for me, this isn’t something I can slip out of. Two choices, two evils. On one hand, I have an entire term of a dreadful, mandatory swim P.E. class in lieu of more fun classes such as fencing or salsa dancing. On the other, I have a few minutes to try my hands and legs at a dreadful, mandatory test. I choose the second as the lesser of the evils. Fear and avoidance stand no chance against my commitment to efficiency. So that summer, I practice. It is literally sink or swim.

The swim test consists of jumping into the pool and swimming a hundred yards continuously. It is the most difficult test of my life. My lungs ache, and so do my arms and legs. And yet I finish it. I pass.

I still am not a strong swimmer. But I know how to swim, and I try not to let my fear and aversion stop me from enjoying life. My second trip to Vietnam, after my college graduation, we go out on a boat past the island of Phú Quốc. Out in the open water, our tour group is encouraged to jump out and swim to explore the reefs. So I do.

We have life vests, but this is still the open ocean, so the guide advises us that we only go if we know how to swim. Mẹ stays on the boat; ba and my brother follow me into the water. I have a great time, at first. I float. I splash. I swim around, relishing in the sea. For the first time in a long time, I feel like a true daughter of Vietnam. Then, my foot brushes against something sharp: a rock on the ocean floor, or a part of the reef. I don’t feel the pain, at first, disguised by the salted sea, but when I come back to the boat, I bleed all over the deck. Only a flesh wound, not deep, yet there is a lot of blood. A dizzying amount, diluted red flowing over the white of the boat.

And so: my second memory of the waters of Vietnam is bleeding.

The boat does not have a real first aid kit. I wash the cut with water, and we use toilet paper to bandage it until we get back to shore. I still have a raised, jagged line across my toe from that day.

Yet I’m still drawn to water, especially to that beautiful jade green water of the land of my parents’ birth, and mine. I have a complicated relationship with that land, and that water. I love it, and I don’t. I know it, and I don’t. It is home, and it is foreign.

What is memory, if not the act of retelling? I come from a nation of lush rivers and beautiful oceans. Almost everything I know of that nation is stories. Ba tells me that in the village, he isn’t taught to swim. As a kid, he is thrown off a bridge in a rushing river by a cousin or an uncle, and expected to figure it out or else. He grows up to be a strong swimmer. Mẹ isn’t taught to swim either: she is a market girl and has never been subjected to this brutish but terribly effective method. She never learns to swim and still, to this day, she’s quite wary of water. In this (and in many things, to both of our chagrin), I take after the latter, more.

Almost everything I know of my history is memory. My people come from a nation of water, and when civil war tears the land apart and the side that they support falls, they have to flee. Across the ocean, on boats, to unknown lands. They leave everything behind but their memories. Sometimes, they leave behind the memories, too. Many perish at sea. Some drown. Some are shot, by the government finding them or by pirates, their blood washing the boat floor. And some, against impossible odds, make it to shore, and find what they are looking for: a new life, a new family, a new chance.

What is memory, if not the act of rebirth? They say that trauma is carried in our veins, coursing through our blood. Past and present. Trauma of our ancestors, and of our childhood. It gets refreshed and renewed with each pump of the heart. I am here. I exist. I survive. Perhaps this fear of water is an inheritance: just as a love for it is. Perhaps this fear and this love, this memory, lives within me for the people who could not.

Whenever I move to a new city, I seek water. A river, an ocean, a lake; whatever I can take. I grow up to dread the beach, and yet, whenever I see water, I am happier. I am even drawn to the visage of water in paintings, rendered in oil, its enemy. Over and over, in different mediums and forms, I build up my collection of water memories, and hope that the good washes out the bad.

What is memory, if not the act of repetition?

Every time I jump into the water, my body flinches, like it remembers drowning. Every time I kick in the water, my foot curls, like it remembers bleeding. Yet within the water, I feel alive. Perhaps I am simply destined to have this love-hate relationship with it. To cherish my trauma. To relive the memory of the past. Over time, the water has shaped me like it shapes all things.

I hope my third memory of the waters of Vietnam will be a more positive one. I hope I, too, will make it to shore and find what I’m looking for – no matter what that is.

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