Why Lupus Awareness Matters in Indian Country

May is Lupus Awareness Month, and I want to start with acknowledging that because it passes quietly in Native communities, and it shouldn’t. At most, a purple ribbon goes up, somebody posts a fact sheet, and then everyone moves on. But Lupus doesn’t move on, especially in Native communities, where it is changing and shortening lives.

I have been living with Lupus since I was nine. Lupus and autoimmune disorders have been with me for most of my life because I am not the only one in my family with Lupus, and my family has been part of more than a few studies due to the prevalence of Lupus, arthritis, and other autoimmune disorders in my family. It’s why I advocate for awareness and access to the advanced care we need. Lupus is disproportionately impacting native people, and without awareness, without access to the healthcare we need, Native people are needlessly suffering and dying. And that is why Lupus Awareness Month should not be ignored in NDN Country and why Lupus Awareness Month campaigns need to be more intentional in including Native people.

What is Lupus?

The Lupus Foundation of America defines Lupus as an unpredictable and misunderstood autoimmune disease. With Lupus, the immune system creates autoantibodies that cannot distinguish between healthy cells and foreign/sick cells and attack the healthy cells instead, leading to inflammation that can damage the skin, joints, kidneys, heart, lungs, brain, and blood. Lupus is also hard to diagnose; on average, it can take 3-6 years to get an official diagnosis because Lupus is a mimic that can mirror many other illnesses, and symptoms can come and go. There is no single test that can diagnose Lupus, no cure, and no predictable course of progression.

The LFA recognizes four main types of Lupus. Systemic Lupus Erythematosus (SLE) is the most severe and common form of Lupus, affecting 7 out of 10 Lupus patients. Cutaneous Lupus affects mainly the skin, with rashes, lesions, or hair loss often triggered by sun exposure. Drug-induced Lupus is a temporary, lupus-like illness caused by reactions to certain prescription medications, and symptoms generally resolve after the medication is stopped. Neonatal Lupus is a rare condition affecting infants of women with Lupus or related autoimmune antibodies.

There’s also a potentially new form of Lupus that researchers are still tracking: COVID-induced Lupus. Since 2020, peer-reviewed case reports and reviews have documented new-onset Systemic Lupus Erythematosus and Lupus Nephritis in patients after COVID-19 infection, and, in some cases, after vaccination. The cases are still rare relative to the total infected population, and researchers are still working out the mechanism. However, SARS-CoV-2 belongs to a known list of viruses that can trigger autoimmune disease in those who may already be genetically susceptible. For Native communities, who are already known to be more genetically susceptible to Lupus and autoimmune disorders, this is not only worrying, but it tracks given the rise in Lupus and autoimmune diagnoses since 2020.

The Reality of Living with Lupus

A lot of people don’t really understand what an autoimmune disease is, and Lupus is often what is called an invisible illness. You can look healthy on the outside while your body is at war with itself on the inside. Even on a good day, you’re still sick.

People often assume that if you’re not visibly sick, you’re fine. It’s an assumption that follows you into workplaces, classrooms, etc. It puts you in an uncomfortable position, having to explain and defend your absence and inability to do what others can so easily do. On a good week, Lupus might look like tiredness, joint pain, and a rash that comes and goes. On a bad week, it’s kidney failure, lung inflammation, blood clots, strokes, miscarriages, neurological damage, and a body working against you on the inside. A flare can be mild or life-threatening, and you can be fine one minute and dealing with organ failure the next. If I’m being honest, it’s that unpredictability that makes living with Lupus hard, because you can’t always be where you want to be or do the things you want to do. You miss out on A LOT of important moments and opportunities.

Living with Lupus also means living with a full schedule of doctor’s appointments and medical procedures. Aside from your primary, your best friend becomes your rheumatologist since they are the central specialist for most lupus patients. However, since Lupus is unpredictable and affects so many bodily systems, your care often expands to a rotating team: a nephrologist for the kidneys, a dermatologist for the skin, a cardiologist for the heart, a pulmonologist for the lungs, a neurologist for the brain and nervous system, a hematologist for blood disorders, an ophthalmologist to monitor for medication-related vision damage, a perinatologist if you become pregnant, and often a mental health provider to help carry the weight of all of it. People with Lupus also tend to develop overlap conditions like Sjögren’s syndrome, Raynaud’s, mixed connective tissue disease, fibromyalgia, or thyroid disease, each adding another specialist and another set of appointments to the schedule.

The medications are a job of their own because you have to manage your prescriptions, organize your daily med schedule, and on top of that, actually make sure you remember to take your meds. Hydroxychloroquine (Plaquenil) is the standard daily medication for most Lupus patients. It requires annual eye exams to check for retinal damage. Corticosteroids like prednisone are often added to control inflammation, and the side effects can be brutal and lead to weight gain, ulcers, bone loss, diabetes, high blood pressure, and increased risk of infection. For moderate to severe Lupus, especially when the kidneys or brain are involved, immunosuppressants such as methotrexate, mycophenolate, azathioprine, or cyclophosphamide, and biologics such as belimumab or rituximab may be required. It’s exhausting because, on top of having to keep track of your symptoms, you’re also having to be vigilant of any side effects since the damage they cause can be further disabling.

Living with Lupus also means living with the unpredictability and unfairness of it. You can do everything right, take your meds, change your diet, exercise to the best of your ability, and still flare. Everything you do has the potential to trigger a flare, and sometimes a flare is triggered without a cause at all. Lupus determines what choices are available for work, school, relationships, parenting, travel, and rest, and it does so without ever taking into account what you want or need.

Understanding Lupus in NDN Country

To understand Lupus in NDN Country, you have to understand that it manifests differently than it does in the general population and for different reasons. We tend to develop Lupus younger, more severely, and we face very different barriers in being able to access the advanced healthcare that Lupus requires.

The CDC reports that Black and American Indian/Alaska Native women are two to three times more likely than white women to develop LLupus. The first population-based registry of American Indian and Alaska Native lupus, Ferucci et al., Arthritis & Rheumatology, 2014, found an age-adjusted prevalence in Native women of 271 per 100,000, comparable to Black women. The highest population of Natives with Lupus turns up in Oklahoma and Arizona, which illustrates the paracolonial nature of Lupus and autoimmune disorders in general. Oklahoma and Arizona were the primary destinations for the forced relocation and confinement of Natives during the mid to late 1800s.

It’s not just Lupus, Native communities also carry some of the highest documented rates of rheumatoid arthritis, spondyloarthropathies, and other connective tissue diseases on the continent. As with Lupus, they tend to develop earlier and run more severely than in the general population. As a result, about 30 percent of Native adults live with a disability, roughly 50 percent more than the national average. Native children carry the highest childhood disability rate in the country.

The rate of disability in NDN Country, the rate of Lupus and autoimmune disorders, as well as diabetes and heart disease, are not accidents or anomalies that came out of nowhere. While there is no known EXACT cause for Lupus, researchers believe that it is triggered by a combination of genetic, hormonal, and environmental factors, which makes sense considering our history.

A 2023 review in Seminars in Arthritis and Rheumatism connected the high prevalence and severity of Lupus in Native populations to the biology of trauma and toxic stress. It makes the correlation of how colonization and its impact on our communities have contributed to adverse childhood experiences, chronic stress, and intergenerational trauma and grief. The residual damage of forced relocation, the Residential Indian Boarding School era, removal from traditional food sources, cultural and spiritual practices banned, languages forbidden, and environmental pollution due to pipelines and mining are all factors that contribute to the high rates of Lupus and autoimmune disorders.

As Natives, we’ve always acknowledged the epigenetic nature of Trauma and the way that colonization has impacted our physical, mental, and spiritual health. Now, researchers and modern medicine are finally acknowledging what we’ve long known: that Trauma alters immune function, inflammation, and gene expression, and can be passed down from generation to generation. The same systems that drove our ancestors from their lands are now driving autoimmune disease through their descendants.

How Lupus shows up differently in our bodies

The numbers and causes are not the only things about Lupus in NDN Country that get missed. The disease itself shows up differently in Native bodies than in the textbooks most providers were trained on, which leads to delayed diagnoses, delayed treatment, and more severe and deadly outcomes.

The same Ferucci study found that nearly 40 percent of Native lupus patients had documented kidney involvement, and end-stage renal disease was already present in 5.6 percent of cases. A separate study using genetic ancestry analysis found that American Indian ancestry was associated with a 3.5-fold increased risk of renal involvement and an earlier age of disease onset. Translation: our kidneys take the hit early, and they take it hard. Hematologic involvement (low blood counts, anemia, low platelets, low white cells) showed up in nearly 90 percent of Native cases. Arthritis showed up in over 80 percent. ANA positivity was 98 percent.

The classic visual cues, on the other hand, are largely absent. Discoid rash was observed in only 8.4% of cases, while only 59% presented with the Malar (butterfly) rash. Neurologic disorder appeared in only 2.8 percent. Native patients are also less likely than other populations to develop photosensitivity, oral ulcers, and serositis.

A Native patient with Lupus, then, is likely to be exhausted, anemic, achy, and quietly losing kidney function, without the obvious physical symptoms providers were taught to look for. For Natives, Lupus is often hiding in plain sight, and the lack of understanding in how Lupus presents differently within Native populations is not only dangerous, but deadly.

Why we need more extensive testing

The under-recognition of how Lupus presents in NDN Country and its impact is known. A 2018 study by McDougall, Ferucci, and colleagues looked at how Native lupus patients fared depending on who diagnosed them. When a primary care provider made the call, only 22 percent of those patients met the full American College of Rheumatology criteria for Lupus. When a specialist made the call, 79 percent did. Specialists were also far more likely to order the bloodwork that helps confirm a Lupus diagnosis: anti-double-stranded DNA testing in 93 percent of cases, versus 73 percent in primary care, and complement C3/C4 testing in 84 percent, versus 52 percent.

What this means is that there are a lot of Native people being misdiagnosed, told they do or don’t have Lupus without the testing necessary to say for sure. Either way, the result is the same: delayed diagnosis, treatment, and care, and we pay the price.

What we need is straightforward. Comprehensive autoimmune panels at the first signs of unexplained fatigue, joint pain, anemia, or kidney symptoms in Native patients. ANA, anti-dsDNA, anti-Smith, complement levels, urinalysis with protein-to-creatinine ratio, complete blood count, and comprehensive metabolic panel. We also need Healthcare providers to KNOW that Lupus manifests differently, and the absence of common physical symptoms does not rule out Lupus in a Native patient. The tests and criteria for a Lupus diagnosis already exist, but what’s missing is the urgency and foresight to actually use them.

As critical as an early Lupus diagnosis is needed, a diagnosis on its own is only half the battle. The advanced, specialized care that Lupus patients need is rare in rural and reservation communities. Rheumatologists are scarce, even in more urban settings. Indian Health Service funding sits at a fraction of per-capita federal healthcare spending. It is always the first to face funding cuts despite the US government having a treaty obligation to fund and provide healthcare for Native peoples. Medications and treatments are expensive, and specialists are often hours away for Native patients. People burn through their energy and gas money trying to stay alive. Because Lupus tends to be more severe and we lack access to consistent and specialized healthcare, our mortality rates are higher, and none of it is a mystery. It is the predictable outcome of a healthcare system built on stolen land and broken treaties.

Ableism within NDN Country

Another barrier Natives with Lupus or any disability face is ableism within our own communities. We are communal people, so it is especially disappointing to be a Disabled Native and find yourself left out of the very community you belong to. Our disabled relatives are often missing from community events, powwows, conferences, and tribal council meetings, and the absence is rarely accidental. The spaces are not built with us in mind. Ramps are an afterthought, masking is treated as optional without consideration for our immunocompromised kin, and accommodations for our Deaf, Blind, and DeafBlind relatives are rare enough to be remarkable when they exist. Indigenous communities are on the front lines of nearly every major justice movement of our time, but disabled Natives still get treated as a footnote when we are considered at all.

Part of why disabled Natives keep falling through the cracks is structural. Tribal nations are sovereign, which means the Americans with Disabilities Act is largely inapplicable on tribal lands. The result is a federal disability rights framework that mostly stops at the reservation line. None of that is an argument against tribal sovereignty, which is what allows our nations to set their own laws and care for our own people in the first place. The argument is that too many of our nations have not yet used that sovereignty to codify disability protections of their own.

A handful of nations have stepped up. The Oglala Sioux Tribe of South Dakota passed the ADA into tribal law in 1994, implementing and enforcing it in full as a sovereign nation. The Navajo Nation passed its own version of the ADA, requiring public accommodations within its jurisdiction to comply with ADA standards. In 1994, the National Congress of American Indians endorsed the Tribal Disability Actualization Process, a framework specifically designed to help tribes develop disability legislation in ways consistent with sovereignty and cultural values. There is already a workable template for any nation that wants to take this on.

Community and culture shouldn’t be reserved for the able-bodied. Before colonization, our communities considered disabled, chronically ill kin, and elders as equals. We didn’t exclude or treat them as burdens to be tolerated. Accessibility is not a special accommodation or courtesy. It’s a return to the way we were before colonization, to the way we existed in kinship with one another. Ableism in our communities is not traditional. It is something we picked up along the way, and we can and should put it back down.

What we owe each other this Lupus Awareness Month

If you read this far, you already know more about Lupus in NDN Country than most healthcare providers. So, thank you for taking the time and believing that it is important to learn about an issue that may or may not be impacting you.

What I want most from this month is a future where Native Lupus patients don’t have to do all the work of educating and trying to survive the very illness they are educating others about, a future where we have help. A future where Lupus and autoimmune screenings are routine for communities known to be at higher risk. A future where we don’t have to fight so hard to access the care we need to survive. None of that future builds itself. We must be the ones to care enough, believe enough in that future to build it ourselves.

For my fellow Native spoonies: keep telling your stories and sharing your experiences. Your story is the data missing in Lupus and medical studies. We need more of it, not less, to fully understand the impact of Lupus and autoimmune disorders within our communities.

Don’t let your acknowledgment of Lupus Awareness Month stop at a purple ribbon. Support and share Lupus warriors’ stories this month and beyond. For more information on how you can be more involved or help raise awareness, visit https://www.lupus.org/get-involved