When Care Harms

Living with Lupus

Like many of you, I’ve been at a loss of what to say. Medical research and free speech is threatened, putting vital research on Long Covid and other complex chronic health conditions in the balance. Threats are being made to disability rights. Education protections are on the cutting board. Yet, what I have realized by talking to colleages and learning about the quiet activism that is occurring in labs and classrooms around the country, is that defying the meta-narrative of silencing by sticking to our beliefs and continuing with our small contributions to moving the needle forward is a powerful act. Therefore, I am posting as I would on another day, addressing cases where people living with complex chronic conditions experience harm and suggesting that there is another way. Even though medicine has a long way to go in order to take deeper and wider view on complexity and the multiplicity of postviral conditions, throwing out the vital research that we do out and starting over is not the way. We can only move forward—even when what we devote our hearts and minds to is most threatened.

Photo by Etienne Girardet on Unsplash

This story is about a woman living with lupus who Kendra Hatfield-Timajchy met in the 1990s, when she was working on her dissertation in anthropology. Lupus is a health condition that is verifiable, although many of its symptoms are not unlike those for Long Covid. I came to learn about this story when I was speaking with my longtime mentor Peter Brown. Peter was Kendra’s mentor and her thoughtful ethnography stayed with him, resurfacing in his mind when Long Covid came to the center of biomedical and social science discussions.

Marian’s story

Marian worked as a trade show manager for an industrial die works firm in Atlanta. When trade shows came to town, she’d manage the booths from sun-up to sun-down. Most of these shows were international clients and everyone relied on her to “get the job done.” In the heat of summer in 1998. Marian broke out with a rash a few days before a show. Her forearms were covered with a bright itchy red, which soon spread to her chest and breasts. The doctor gave her a ten-pack of prednisone and Marian went back to work. Marian showed up the next day for the trade show and worked until it closed. She felt awfully tired.

The next morning, Marian woke up and thought she had the flu. Her joints were achy. Her muscles hurt. She felt crushing fatigue and spent the day in bed without any appetite. She also felt terribly dizzy and had trouble standing. That night, she developed a fever and had night sweats. Over the next three weeks she could no longer drive and spent her days in bed.

As the days progressed, Marian developed tremors and visual disturbances. Her hands and feet became reliably numb and a rash covered her face. Her hair fell out. Weeks turned into months. Marian lived alone and began to feel isolated despite supportive family and friends. When she got sick, she had to leave her work and filed for disability. Her doctor prescribed anti-anxiety medication and antidepressants to help her cope but her symptoms remained “unexplained.”

By October, she was admitted to Gwinnett Medical Center for testing. The clinic confirmed that she still had the hypothyroidism that she’d had for a decade. However, she was negative for HIV, hepatitis, and Lyme disease, which were conditions that might present in a similar way. They conducted an MRI that showed no “organic central or peripheral nervous system disorders.” Yet, they found high rates of sedimentation rate, indicating more inflammation in the body. High rates usually point to increased immune activity that may signal infection or, for Lupus patients, disease activity.

Over the next six months, Marian went on a diagnostic odyssey. This trip is not for the weary, particularly for a middle-class Black woman like Marian who was often dismissed or disbelieved. Marian’s odyssey brought her to seven physicians in the fields of primary care, endocrinology, infectious disease, neurology, and rheumatology. She spent hours preparing for these appointments: leaving work to travel to the clinic, waiting for the doctor, sitting alone in the cold sterile room while nurses and eventually the doctors funneled through. Eventually, she was fed up with language she didn’t understand and the lack of a diagnosis. She rolled up her sleeves and decided to do her own research on autoimmune diseases online.

Marian also began advocating for herself. Her HMO wasn’t covering her care, so she reached out to her employer and asked for a better plan. They advocated for her to the insurance company and she was switched mid-stream to a PPO, which covered more of her care. A friend connected her with a neurologist at the Shepherd Spinal Center. Like many people with complex chronic illnesses, she reached out to a friend who was dealing with similar territory. In this case, her friend had ALS, also known as Lou Gehrig’s disease. The neurologist Marian saw at the spinal center suggested she had a “connective tissue disorder” and referred her to another rheumatologist, who he described as “aggressive” but would get the job done.

Marian wrote a lengthy letter to the physician, describing the list of physician names she’d seen, specialties, tests, test results, preliminary and disproved diagnoses, and past and current medications. In her first visit, the new rheumatologist, referred to as Dr. X, diagnosed her with system lupus erythematosus, cutaneous vasculitis, Sjögren’s syndrome, and Raynaud’s syndrome.

Marian burst into tears. “You know everybody else has been telling me all this is in my head,” Marian said as she felt a wash of immense relief pulsing through her body. “You didn’t tell me I was crazy.”

Marian’s story is a somewhat typical case of someone living with a complex chronic illness: her symptoms crept up on her and eventually turned her life upside down, it took months for someone to take her symptoms seriously, and there was no clear cause or path for recovery. It often requires people to uncover stone after stone until one, two, or more diagnoses are assigned to them. In some cases, there are clear treatments. In many cases, there aren’t.

I reached out to Kendra Hatfield-Timajchy, who has worked at the Centers for Disease Control and Prevention for two decades. Kendra never intended to study lupus but she was interested in why people don’t believe women in medical settings. While she was particularly interested in chronic fatigue syndrome, in the mid-1990s, chronic fatigue syndrome remained a contested condition that lurked in the shadows of medicine and the social conscious. She was drawn instead to study systemic lupus erythematosus (SLE, or ‘lupus’), a chronic autoimmune disease, because it was more widely recognized, even though it was incurable and the cause was unknown.

Marian first met Kendra at a lupus support group meeting in Atlanta. Over the course of several years, Kendra attended several support groups in Atlanta for women living with lupus, including a couple groups that were exclusively for Black women. (Even though Kendra was white, she was welcomed into the group as a participant observer). Kendra and Marian became close fast in part because they shared so much of their personal stories and Marian’s health quickly deteriorated. Marian needed a strong social and family network to support her. Already, she’d gained 65 pounds in less than two years due to an increasing amount of prednisone she needed to control lupus. She left her job and was relying on disability, often spending long days alone at home. The support group had become a sustaining presence in her life.

Marian only lived two more years after she met Kendra. But Marian didn’t necessarily die from lupus. Instead, Marian died from biomedical complications and treatment failures that were in part due to lack of knowledge and oversight about her care.

Kendra became close to five women who became incredibly ill over the course of living with and treating systemic lupus. Kendra not only spent time with these women in support groups but also she spent hours in their homes and accompanying them to medical appointments. Kendra found over time that there was a single rheumatologist who Marian, as well as the other women she shadowed, were seeing in Atlanta. Kendra observed how he was “experimenting with various chemotherapies to try to knock down their immune response” using a drug called Leukeran, which was created during World War II and grew out of early trials for treating cancer. Today it’s used to treat leukemia and lymphoma and works by slowing down the growth of cancer cells. She realized after months of observation that this drug was causing Marian’s demise.

Although he used the drug with many of his most severe patients, “the five women I spent time with in particular became incredibly ill as a result of taking this medication,” Kendra explained. “If you're taking chemotherapy, it's knocking down your red blood cell count. And so he would give them another medication that would increase the white blood cell count in order for them to not become so immunosuppressed that that they were getting sick all the time. And then there was another drug he was giving them that would kind of boost their red blood cell count. It was a really difficult thing to manage. He was a rheumatologist who was consulting with a hematologist who was consulting with their oncologist and managing all these cases and giving them very high doses of medication.”

Photo by Diana Polekhina on Unsplash

It wasn’t only the medical experimentation that was striking to Kendra. She moved from researcher to advocate because the women she was shadowing needed help and they didn’t know where to get it. Some had sisters or brothers, or parents who could step in and advocate for them. “But what I observed very clearly was that in a crisis situation you absolutely have to have someone with you in the room checking the medications and the dosages that they're giving you. You know the nurses mean well, but they’re completely overwhelmed, or the doctors write an order that somehow gets mistranslated into their patient record. Having someone negotiating that and to basically protect you and lobby for you in that situation is critical.”

This advocacy is not only crucial in the moments of crisis but also in the lingering work of advocating for insurance companies to make sure the medications and care was covered, and to figure out how to get reimbursed. “It became a full-time job for these women,” Kendra told me, “And they were all incredibly ill at the same time.”

Much like Kendra did for Marian, many patients with complex chronic conditions hire health advocates (if they can afford it) to support them in their diagnostic or treatment odyssey, in part because they needed someone to become their voice when their body wavers and they tire of fighting so much to be seen.

What Kendra found most problematic was the focus on curing Marian because it was the treatments that were incredibly toxic to the body that killed her so fast. “There is a false belief in biomedical science that we want to cure disease and illness, and somehow, you’re weak if you’re ill chronically,” Kendra explained. “And I think most people in the world don’t think that way. If you look at other medical systems outside of biomedicine, living healthy with disease is not a foreign concept. And I think doctors are trained, especially in the United States, to basically throw everything they have to knock down the immune response in order to prevent these crisis events from happening. Actually, it’s a much better strategy to not try to cure someone with lupus—but to make it manageable.”

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Take a look at Kendra’s dissertation if you’re interested in reading more about her work: Hatfield-Timajchy, Kendra S. (2007). Delayed diagnosis: The experience of women with systemic lupus erythematosus in Atlanta, Georgia. Emory University ProQuest Dissertations Publishing. 3298444.