Chronically Ignored: How Western Medical Practices Harm Chronically Ill People

Close up of a clear, plastic pill organizer with pills of various colors inside.

At 7:47 pm, I had so many wires attached to me.

Though I craved my typical end of the day shower, I had to find another way to self-soothe. I did some yoga, avoiding the Superman and cobra poses; they could tear the wires off. The neighbor’s cat burrowed into my chest only to encounter the coiling cables, which he tried to bite at. I gently shooed him away.

The Holter monitor is one of several tests my doctor ordered, after a slew of symptoms alerted me to disruption in my health. At the start of 2022, I began to experience tinnitus. The brain fog that had cottoned my headspace for many years persisted. So did the fatigue. Though I’d consulted with my doctor about these symptoms, routine lab work showed no abnormalities. I accepted this and didn’t push for further testing.

More new symptoms arose in the months that followed. I emailed my doctor again.

The following day, Holter monitor on, I headed to Kaiser. While waiting in the lobby for my neck ultrasound, I looked down at the monitor again and compared myself to a lab hamster, scurrying from one testing station to another. I wondered, as I sipped samples, which one had the result I was looking for.

Later that week my test results came back. This time all wasn’t normal; one test showed highly elevated TGA/IGA markers. These are the antibodies that a Celiac person’s body produces after ingesting gluten. I’d tested positive for Celiac disease, an autoimmune condition wherein the small intestine attacks itself after consuming gluten, making it difficult to absorb nutrients. Undetected and untreated, it can lead to complications from Parkinson’s to multiple sclerosis and several types of cancer. The only treatment is adherence to a strict, lifelong gluten-free diet.

As I’d done when searching for answers, many patients (women especially) navigate a maze of doctors, tests, misdiagnoses, and dismissals before finding accurate conditions. Some spend thousands of dollars and hundreds of hours trying to piece it together on their own. They shell out hard-earned money (or money they don’t have) on screenings, x-rays, MRIs and ER visits not covered by insurance, in a desperate attempt to figure out what’s wrong. It depletes finances, time, and emotional bandwidth.

“Between the two of us, we saw thirty-seven doctors before we got real answers. And in my case, sadly, the only real answers came from my own detective work and experience,” wrote Stephen Phillips, author of Chronic.

Chronically ill people of color are hit especially hard. According to “Dark-skinned patients face particular difficulties in getting a Lyme diagnosis. Identifying the red target symbol is easy on light-skinned people, but not so with dark skin tones. A recent UCLA study found 34 percent of Black patients with Lyme disease had neurological complications compared to just 9% of whites, suggesting the disease may not have been recognized for many Black patients in earlier stages when it’s easier to treat.” When the tools used for diagnosis and treatment are created with only a certain segment of people in mind, vulnerable people are bound to fall through the deep crevices of our systems.

According to a study by the Keck School of Medicine at the University of Southern California, U.S. minority populations with autoimmune conditions are more likely to experience poorer outcomes due to increased barriers faced by their social standing. “For Blacks and Latinos with MS or other autoimmune diseases, access to neurological specialists is rare and diagnostic tools are limited,” lead researcher Lilyana Amezcua, MD, said in a press release. The limitations of our medical system add additional stressors to the many they already face. This makes Western medicine reform a social justice issue.

Autoimmune diseases are on the rise, with millions of people across the U.S. alone living with at least one of them. As chronic illness author Sara Ramey wrote, their rate of increase since 1980 has “clocked in at between 200 and 300 percent.”

I’m not alone in having gone undiagnosed for a significant time. Studies have shown that it takes patients, on average, five doctors and three and a half years to receive a diagnosis.

There are friendlier interpretations as to why this is. For one, many autoimmune conditions present overlapping symptoms. In addition, unlike Celiac, the detection of many of them requires more than just a single lab. (Yet remarkably, even with a widely available, straightforward blood test, 80 percent of Celiacs remain undiagnosed.) Testing for diseases like Lyme requires a more rigorous and complicated process. Thirdly, some chronically ill patients may present with symptoms atypical for their condition(s).

Sometimes, though, the lag in diagnosis is partially attributable to time-pressed, stressed doctors either not giving enough weight to patients’ symptoms or not taking it upon themselves to zoom out and connect the dots.

Many I’ve talked to in the Celiac community have had doctors who brushed off their complaints for years. Some dismissed them as hypochondriacs or attributed their symptoms to a psychosomatic condition best treated with antidepressants. My job as a medical interpreter also puts me face-to-face with the invisible affliction of chronic pain on a daily basis. While I’ve seen some doctors respond with compassion and a willingness to dig deeper into potential causes, I’ve witnessed others too easily dismiss patients, particularly when they’re women.

I acknowledge that most doctors are “following orders” and practicing according to what they were taught. It’s just that the system they were taught comes with substantial amounts of unconscious bias, meaning that if they don’t question aspects of those teachings, they’ll continue to perpetuate that bias. In addition to unconscious bias, there are structural limitations to the U.S. model that doctors faced with diagnosing chronic invisible conditions are working within. 

As Sara Ramey phrased it in the Ladies Handbook, “You can’t get funding to research a disease that isn’t considered serious or real—but a disease is not likely to be considered serious or real if there is no good research or clinical trials associated with it.” Chronic illness is poorly understood, under-researched, and underfunded. Because of this, doctors can only do so much.

Their regular prescribing of meds often comes from a desire to help relieve suffering. Still, other times they seem ready to prescribe before even examining you. For many patients, a trip to the doctor feels like a visit to the vending machine. In then out.

What’s also tricky about both diagnosing and providing support for chronic illnesses is that symptoms often ebb and flow—worse on some days than others.

It’s for these reasons that people with chronic illness often find ourselves feeling unseen and isolated—within the medical system specifically, but also in the culture at large. Ours is one that prefers quick fixes, more comfortable with clear-cut “before and after” recovery narratives. The concept of loose ends is undesirable and unsettling, especially here in the U.S. Many might even suggest that it’s un-American.

A way forward?

I’ve wondered why Western medicine can’t implement a cohesive practice where patients’ doctors are in regular communication with one another. They engage in continuous consultation and planning to best help the patient. Each brings their puzzle piece to the center of the table. They connect the pieces to gain a more comprehensive understanding of what the patient needs and, thereby, develop a treatment plan.

At the end, they step back and take in the picture that all their pieces have formed. That picture might not shout lupus, Lyme, or scleroderma straight-out, but it will at least point them to a path of inquiry that might yield further clarity down the road.

When doctors remain siloed and simply prescribe medication for a singular symptom, on the other hand—especially if the symptom resolves temporarily—it’s as if they’re not even looking at the path.

Implementing a more preventative approach could significantly impact the lives of disabled and chronically ill people for the better. Holistic and alternative healthcare are somehow seen as the more “woo-woo,” “out there” approaches. Yet in my mind, the lack of intercommunication between patients’ doctors—as well as the fact that we are still sequestering organs, treating them as independent from one another—seems the more rudimentary and short-sighted method.

Maybe not altogether wrong, but at the very least less wise.

Patients deserve better. Too many of us have lost years of our lives to illnesses that weren’t identified or managed soon enough, allowing them to become bigger problems. 

It’s my hope that, one day, mainstream medicine will understand and acknowledge the harm caused by this incomplete approach. Much of the harm comes from failure to thoroughly investigate, therefore neglecting to properly assess. As a result, patients don’t receive the care they need. A person cannot be adequately supported until their ailment is accurately identified and uncovered.

It will require acceptance that some solutions require a bigger picture focus. We need Western medicine to become that view-master. More than anything, our collective health as well as that of future generations’ is worth the investment.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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The “Imperative of Efficiency” and The Importance of Interdependence

Indoors. A plastic Starbucks container of iced green tea and a dented, silver reusable Klean Kanteen brand water bottle sit on a dark wood grain table. To the left of them, two brown Starbucks napkins are soaked with liquid and ice. Other customers in the background.

“The experience of illness is one of dependency, and the social mores of our day regard dependency as weakness.” — New York Times review of Megan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness

The Starbucks iced green tea and my Klean Kanteen—they make a cute couple, don’t they?

You may not be able to tell from this photo, but the water bottle is leaning against the green tea. The tea supports it. Without the cup of tea, the water bottle would fall.

At some point—I don’t remember when—I’d either dropped the water bottle or hit it against something. This created a large contusion on the bottom, making it wobbly and precarious. The bottle lost the ability to stand on its own.

That day, forgetting about the bottle’s condition for a split second, I picked up the tea to take a sip. This caused the water bottle to topple over, drenching the entire table. It took about 10 Starbucks napkins to fully mop up the deluge.

After this mishap, three options presented themselves to me. I could fix the water bottle. Maybe the contusion could be flattened back into the structure, restoring its previous shape. I could leave it as is. Or I could purchase a new one.

Ultimately I decided on the latter option. For the most part, I felt okay about it because water bottles don’t have feelings. They are indifferent to being thrown away.

At different moments throughout our lives, we may find ourselves in the water bottle’s shoes. At other moments, we may be the cup of green tea. This is an inevitable part of the human condition. However, it seems like the prevailing mentality about relationships (especially in the U.S.) is that if one person is the bottle and the other is the tea, then the relationship is not healthy. 

As Maggie Nelson declared in her book The Argonauts, “Dependence is scorned even in intimate relationships, as though it were incompatible with self-reliance rather than the only thing that makes [self-reliance] possible.” The prevalence of this mentality too often leaves those who are ill, fatigued, or aging feeling isolated. We are made to feel shame on top of the pain we already experience. Not only must we manage the frustration of these limitations, but also the sharp sting of the message that we are weak. For many, asking for assistance implies that a person is burdensome.

Dom Chatterjee wrote about the ramifications of this in their own life for radically body-positive blog The Body is Not an Apology:

“One of the abusive patterns in my family was the constant push to be independent. This was true even when healing from a physical injury that prevented me from working and spurred a year-long breakdown. Suffice it to say, I learned about the ableism behind independence-focused rhetoric the hard way.”

Though my mom’s vision has always been compromised, in 2013, it deteriorated further, leading her to retire early from her job as a foster care nurse in 2015.

My dad has taken wonderful care of her. When the two of them walk in public together, he directs her when to step up or down, alerting her to sidewalk elevation changes and cracks in the road. At restaurants, he reads aloud the menus. He types and reads aloud emails; he cuts her food. During movies, he describes visual details, the absence of which may affect her comprehension of the plot. Together they were able to get their swim club to install a lane that would keep her from unintentionally swimming into the others. His attunement to her needs has come with a patience and steadiness that I feel fortunate to have witnessed.

My own chronic illness symptoms are part of what drew me to the independent contractor lifestyle—first with Lyft and then with medical interpreting and writing. My energy was low most days; I was likely dealing with undiagnosed celiac disease at the time. I didn’t feel that I could keep up with the demands of a standard job. 

At one of my regular interpreting assignments, I’d return to my car with my head spinning. I once felt so dizzy that I waited for 15 minutes before driving home. Every so often, the brain fog would feel so intense that it was like someone had unscrewed my brain, poured maple syrup inside, then screwed it back on. My symptoms are less severe now that I’m on a gluten-free diet but I still deal with constant tinnitus and dizziness under bright lights that can make it challenging to focus on my work. 

After my diagnosis, my friends’ and parents’ support helped make the transition much easier, just as my dad’s support of my mom helped her. My mom even organized our entire Thanksgiving dinner to be 100 percent gluten-free. The meal was beautiful, complete with pretty much all the staples, because she wanted to make sure I didn’t miss out on a single thing.

I appreciate the friends whose support helped ease the burden of the transition. Some had gluten-free cookbooks delivered to me shortly after my diagnosis. Others were there to listen and be present with me after my endoscopy.

Still, the idea of day-to-day invisible struggle is hard for many to wrap their heads around. And it’s difficult to offer support for a condition that you don’t understand.

As Megan O’Rourke put it: “We are bad at recognizing the suffering of others unless we are given clearcut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.” The author goes on to describe how, when she once had a minor (but visible) injury, everyone rushed to her assistance—even though it didn’t hurt much. Yet during her most difficult moments, no one could see, therefore she received little support.

Collectively, we need more understanding on a systemic level. We need to be able to have open and honest conversations with our bosses—without worrying that we’ll be misunderstood as lazy and under-performing or fired for not being able to complete jobs at the same speed as our coworkers.

True helping often requires slowing down. It demands being comfortable with vulnerability and dependence. It requires questioning the saying “pull yourself up by the bootstraps” rather than applying it, without critique, to all situations.

I often find myself wishing that helping wasn’t considered an extraordinary act of kindness, which perpetuates the idea that people with disabilities are burdens requiring great sacrifice. Instead, I wish that it was standard behavior for our culture, an intuitive part of caring for others that feels second-nature.

Yet as Jamil Zaki, associate professor at Stanford and author of the book The War for Kindness said, “We live under an epidemic of ‘time poverty,’ constantly squeezed and harried, and people predict that spending time on others will make things worse. For every minute they give to someone else, they’ll be a minute poorer.” I think of moments wherein I too have fallen prey to this mentality. As a Lyft driver, during moments of stress or overwhelm, I often fell into the less-than-ideal habit of looking at passengers like they were just numbers. At times, I’d become easily frustrated by any obstacle to achieving my goal for the day (give X amount of rides, earn Y amount of dollars).

Once, a passenger called saying that he wasn’t at the location provided in the app. I felt slight irritation rising from within me. It wasn’t until he approached the car with a suitcase and his beautiful black guide dog that it occurred to me that the passenger may be blind—he confirmed this upon getting in. This sight rerouted me from “perfunctory work mode” to “alert human mode”—reconnecting me to my capacity for patience and gentleness. In moments like this, it is important to discard what author Leslie Jamison described as an “imperative of efficiency” that gets in the way of empathizing. I was reminded that, in addition to being a Lyft driver trying to earn money, I was also a human trying to minimize the spread of harm.

I think that we sometimes forget that much of who and what we are now has come from other people, whether we like to admit it or not. No newborn emerges from the womb inherently strong and self-sufficient. We arrive entirely dependent, with individualized needs and differing temperaments. A combination of our home life, local community,  and the larger culture we’re born into either fosters growth and acceptance of those needs—meeting them and affirming our sense of identity—or discouragement and rejection.

Many people who function seamlessly weren’t born inherently “strong” or “better”; rather, they were born into circumstances that fostered the best in them. Or perhaps they came into this world with needs that society automatically accepts with open arms, which further bolstered their self-confidence. 

A lifetime of experience makes it clear to me that others’ needs often become burdens when we conform too strictly to the “efficiency” mentality. If we consciously remind ourselves to slow down, we might realize the perceived threat isn’t that great after all. We might realize that we were wired to help one another. It is how our species, on the whole, has survived.

Zaki also stated: “The opposite is true. After helping others, individuals experience ‘time affluence’ or a sense of effectiveness and abundance.” The reward is in the relationship. It’s not instant gratification, but more of a slow burn. The rewards of deeper connection creep up on you. They take the form of a more chronic energy that calms the spirit in an ever-present way, rather than spiking your dopamine in a single moment or two.

Embracing this mentality would lead to more support of the disabled community in general. This paradigm shift would allow society to more easily recognize the inherent benefits of investing resources into supporting other people’s humanity in the ways that we most need.


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.