Years Of Pain And Delayed Diagnoses: The Hidden Toll Of Lupus In Communities Of Color

By Aaron Allen, The Seattle Medium

For Annalisa Mitchell, lupus did not arrive as a diagnosis. It arrived as pain, exhaustion, and years of not being believed.

Diagnosed in 1997, Mitchell, co-founder of the Anderson and Rice Kidney Autoimmune Wellness Collective, said the autoimmune disease slowly consumed her body while providers repeatedly dismissed symptoms that she knew were real.

“People that have lupus can look fine,” explained Mitchell. “People think that they’re lazy because they’re always laying around and they’re sleepy and they don’t look sickly, but their body just is enraged and attacking themselves.”

“For me, when I came down with lupus, my joints felt like somebody had taken some Saran wrap and just wrapped my body so tightly,” she continued. “I would go get massages or a stretch, and my body would just draw back up because your limbs and your connective tissues are extremely inflamed.”

Mitchell’s experience reflects a broader public health challenge surrounding Systemic Lupus Erythematosus, or lupus, a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissue, causing widespread inflammation throughout the body.

Public health officials increasingly recognize lupus as both a complex medical condition and a crisis of racial disparity, as communities of color experience earlier diagnoses, more severe complications, and higher mortality rates.

According to Dr. Michelle Terry, a clinical professor of pediatrics at the University of Washington School of Medicine, one of the biggest challenges begins with diagnosis itself.

“Lupus is kind of hard to diagnose, so it’s usually not the first or second or third time the patient visits a health clinic or physician to make the diagnosis,” says Terry. “They might present with fatigue, joint pain, swelling, a bunch of different things. Once the diagnosis is finally made, the doctor and patient have to have a therapeutic relationship, so that they can plan together.”

Data from the Centers for Disease Control and Prevention show women of color shoulder the greatest burden.

Black women are two to three times more likely to develop lupus than white women, with as many as one in 250 young Black women living with the diagnosis. American Indian and Alaska Native women experience the highest prevalence rates at 270.6 cases per 100,000 people, while Hispanic and Asian women experience rates two times and 1.4 times higher than white women, respectively.

Although men account for only about 10 percent of lupus cases, disparities remain pronounced. Black men experience lupus at seven times the rate of white men, while Hispanic men experience rates five times higher than white males.

The disparities extend beyond prevalence and into disease severity.

Minority populations are diagnosed roughly six years earlier than white patients, often in their late teens and 20s. Severe kidney complications known as lupus nephritis affect 53.2 percent of Asian patients, 50.7 percent of Black patients, and 49.4 percent of Hispanic patients, compared with 25.4 percent of white patients.

Because lupus frequently attacks internal organs, mortality outcomes vary sharply. Black patients die, on average, more than a decade younger than white individuals living with lupus. For Black and Hispanic females ages 15 to 24, lupus ranks as the fifth leading cause of death among chronic diseases.

Researchers point to both biological factors and structural inequities as contributors to the disparities.

“Health disparities are differences in health outcomes. And the key is that they’re usually preventable differences,” said Terry. “There’s plain old racism. There’s a systemic effort where the concerns of minoritized people, Black people, are discounted as not being important.”

Mitchell said those inequities mirrored her own medical journey.

For more than a year, providers repeatedly attributed her symptoms to anxiety.

“I probably went through a whole team of different doctors,” recalled Mitchell. “They would look at what the previous doctor said: ‘Oh, well doctor such-and-such said we think you’re just a little anxious. Your labs came back and your arthritic levels were just a little bit elevated … we just think you might be a little anxious.’ They gave me medication to treat anxiety.”

The dismissal became even more apparent when she requested access to her medical records.

“When I asked to see my records, they basically described me as a 27 or 28-year-old African American,” said Mitchell. “They basically called me a hypochondriac. They just didn’t listen to me.”

Terry said structural inequities can also be embedded directly into medical systems.

She points to previous versions of the estimated glomerular filtration rate, or eGFR, a standard test used to monitor kidney function that historically included race-based adjustments for Black patients.

“In previous iterations of the calculation, all Black people … got an extra 20% bonus point in their estimated GFR calculation,” said Terry.

“As Black individuals’ kidney functions declined, because of this extra 20% correction factor, their kidney function still looked like it was in a normal to low-normal range,” she continued. “Had the correction factor not been present, it would have been recognized that the kidney disease is progressing and additional measures needed to be implemented.”

Mitchell said disparities can continue even after diagnosis, particularly when discussing treatment pathways.

“When my lupus caused me to go into renal failure, I noticed that a lot of people of color are automatically put right on hemodialysis, which is the harshest on the body and causes havoc,” said Mitchell. “They don’t give you the option or tell you about peritoneal dialysis, which can offer a much better quality of life.”

Advocates say community support becomes especially important when patients feel stripped of agency within medical systems.

To push back against those barriers, Terry emphasized the importance of community transparency and shared lived experiences.

“It’s really important to share knowledge,” said Terry. “For historically, folks may not have shared that they have a serious diagnosis. I, for one, would listen carefully to someone who is a trusted voice in my community versus the general information that is published for everyone.”

Terry also encourages patients to avoid navigating difficult medical appointments alone.

“I usually recommend that if anyone is visiting a doctor with whom for the first time, or with whom they don’t have a therapeutic relationship, that they take somebody with them,” said Terry. “Someone who can just listen and take notes because listening is imperfect.”

She also recommends writing down questions beforehand to ensure concerns are addressed during short appointments.

Through her advocacy work during Lupus Awareness Month, Mitchell hopes to empower patients to understand their lab values, ask questions, and advocate for themselves.

“I want to be a voice for the people in the community when it comes to the disparities we have within the medical field,” said Mitchell. “I want them to understand that you don’t have to just survive living with these diseases, but you can actually thrive.”

“When you go to the doctor nowadays, they give you 15 to 30 minutes and they don’t break down what these numbers mean,” she added. “Sometimes we need to speak up and say, ‘This number is abnormal, can we look further into this? Can you send me to a specialist?’ We shouldn’t have to wait until a number gets so bad that by the time you are referred, you are already in renal failure.”