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 wpr.org: “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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