These symptoms often overlap with other conditions, which makes it hard to know when to consider lupus. That’s why it’s especially important to know who lupus typically affects. Researchers say women of color are at the top of that list. A September 2017 study published in Arthritis & Rheumatology conducted by researchers at NYU School of Medicine found that black women, Hispanic women, and Asian women all have higher rates of lupus when compared with non-Hispanic white women. The researchers behind the effort, dubbed the Manhattan Lupus Surveillance Program (MLSP), chose to study lupus cases in the New York City borough because of its ethnic and racial diversity as determined by U.S. Census data.
They combed through more than 76,000 records, narrowing their scope down to 1,854 eligible cases, all of whom resided in Manhattan during the surveillance period from January 1, 2007 to December 31, 2009 and met at least one of the three American College of Rheumatology criteria for lupus diagnosis. Their analysis found that non-Hispanic black women had the highest lupus prevalence, (210.9 per 100,000 black women had the condition in 2007) followed by Hispanic women (138.3), non-Hispanic Asian women (91.2), and non-Hispanic white women (64.3). The study provides some clarity as to just how high lupus rates are for women of color. Although the study didn’t analyze lupus rates in American Indian women, previous research has found that they are also disproportionately affected.
“When I discovered [what lupus was], I felt like, ‘Why isn’t lupus becoming a household name for women of color?’” Ayala tells SELF.
With Ayala’s diagnosis came clarity and frustration.
Ayala’s sudden numbness in her limbs and impaired speech and sight were just the latest in a string of worrisome symptoms. In the previous five years, she’d had multiple flus, along with colds, sinus infections, and pneumonia. When she went to donate blood one day and asked if she could also donate plasma, the medical professionals said she could not, as the platelets in her blood were very low. Lupus didn’t seem like a possibility, though, because a doctor had already told her she didn’t have it.
In 2010, Ayala’s primary care physician had run an ANA test, which detects antinuclear antibodies that attack the body’s tissues. Most people with lupus have positive ANA tests, which signifies that their immune systems are stimulated, according to the Mayo Clinic. When Ayala’s test was negative, her primary care physician ruled out lupus as the cause of her health issues. (While most people with lupus will have these antibodies in their system and test positive, according to the Mayo Clinic, it’s not a guarantee.)
After receiving her diagnosis, Ayala wished she’d known that while an ANA test can suggest lupus, no one test exists to diagnose the condition. It’s much more complicated than that—in reality, the combination of symptoms, tests, and physical exams are necessary for a lupus diagnosis, according to the Mayo Clinic.
Lupus is often misunderstood and misdiagnosed.
A full 61 percent of Americans said they knew little or nothing about lupus in a 2012 Lupus Awareness Survey; 74 percent of Hispanics and 57 percent of African Americans said they had either never heard of lupus or knew little or nothing about the disease.
It’s true that lupus is a fairly rare condition when compared with other illnesses that commonly impact people of color, like type 2 diabetes or high blood pressure, Meggan Mackay, M.D., a rheumatologist at Northwell Health and professor at The Feinstein Institute for Medical Research, tells SELF. Still, this means many patients aren’t armed with the information needed to advocate for their own health care.
For some patients and their families, a lupus diagnosis is difficult to accept at first, leading the patient to seek second opinions from other doctors who may or may not be as familiar with the illness. But delaying treatment from qualified providers can complicate a person’s journey to finding good care for their health issues.
On average, lupus patients took more than two years to seek medical attention for their symptoms, and they received a formal lupus diagnosis about 3.5 years after that, according to a 2015 paper published in the Annals of the Rheumatic Diseases based on the responses of 827 people with lupus. Nearly 63 percent of those people were misdiagnosed before finding out they had lupus.
“Given the overall rarity of the disease, ER and primary care doctors may be less familiar with the nuances and breadth of organ involvement that can occur in lupus when a patient presents with a wide variety of symptoms,” Dr. Izmirly says. “But a delayed diagnosis can increase the potential for injury caused by the disease as appropriate therapy may not be offered. The management of lupus often involves coordination of multiple doctors and immune-suppressing treatments to allay various symptoms.”
Socioeconomic factors play a critical role in health care access and outcomes, including for women with lupus.
This is because factors like your insurance status and ability to pay for medical services could impact or delay access to care, Jorge Sánchez-Guerrero, M.D., head of the rheumatology division at Mount Sinai Hospital in Toronto, tells SELF. So can how close a specialist is to your home, whether you’re in an area with the best medical care possible, and your immigration status.
Dr. MacKay says that language also plays a critical role in providing care. For patients who require an interpreter, there’s a chance that the telephone interpreters provided in clinics may miss key details the doctor needs to know, and having a family member or friend there to interpret could be more “user-friendly” for the patient, she says—but that requires people beyond the patient to also get time off work or find childcare if necessary.
And, depending on their background, some minority patients are distrustful of medical professionals. Research suggests that the reasons behind this are multifactorial and may include cultural elements as well as the abusive historical practices of using black people in medical experiments, as we saw with the Tuskeegee Study. On top of that, implicit racial biases still exist in health care settings. All that said, delaying treatment from qualified providers can make it harder to properly address health concerns.
Overall, these components paint a stark picture of the challenges facing many women of color with lupus and how that can lead to poorer health outcomes. A 2017 study published in Arthritis Care & Research examined 402 pregnant women with lupus, finding that adverse pregnancy outcomes for black and Hispanic women with lupus were approximately twice as high as they were for white women with lupus, and that socioeconomic status was one factor contributing to this disparity.
Ayala’s lupus still flares up, but now that she’s aware of it, she can better focus on managing it.
When Ayala could no longer remain in the corporate world, she turned a challenge into an opportunity. She resigned from her job at a mortgage company after running through her family and medical leave benefits, racking up unpaid absences, and receiving write-ups from her superiors. “[What’s] very hard to do when you’re chronically ill is show consistency,” she says. “It starts to cause problems in the corporate world.” Now she’s a personal trainer at her favorite gym and has started a baking business called Barbell Sweets.
She’s also dealing with another major life change: pregnancy. After finding out she was expecting her third child in June, Ayala had to cut her medications down from roughly 26 pills per day to six and stop her IV infusion medication to avoid affecting the pregnancy.
Since reducing her medications, Ayala started experiencing an uptick in lupus symptoms like joint pain, brain fog, and fevers. She is now on bed rest and can only work two hours a day, so most of her time now is spent resting—though she’d much rather be enjoying the outdoors or spending time with her family. She’s concerned about being able to care for her child after the birth.
For now, Ayala is focusing on communicating with her doctors (oncologist, hematologist, neurologist, rheumatologist, maternal-fetal medicine doctors, and obstetrician) regularly about which medications are best for her and the baby, who doctors say is healthy.
And on her good days, she still pushes herself, returning to the gym to deadlift, revel in the beauty of what her body can do, and remind herself that she’s capable of handling everything coming her way.
“I never thought I would be lifting weights and screaming to hard rock music,” Ayala says with a laugh. “Even when people say you can’t achieve something, it’s really up to you. It’s truly in your hands.”