Fresh Perspective on an Unpredictable Foe

Luis Hernandez’s mother not only gave him life—she also saved it. 

Shortly after her son was diagnosed in 2014 with the autoimmune disease systemic lupus erythematosus (SLE), he developed a persistent cough but otherwise was feeling “more or less OK,” Luis recounts. 

His mom, Veronica Loa, wasn’t convinced. She pressed Luis to visit his doctor, who immediately detected the crackle of fluid through a stethoscope: Luis’ lungs were hemorrhaging. He underwent a bronchoscopy to extract more than three cups of blood from his organs. “The doctor said if my mom had not taken me to do the X-rays, I would only have lasted three more days,” Luis says.

He learned the disease was also launching an assault on his other organs and followed his doctors’ urging to begin chemotherapy immediately. He recalls, “They wanted to knock out the immune system, because that is what the lupus was taking control of to go after my body.”

Fighting a Misguided Internal Assault 

One of the more than 100 recognized autoimmune diseases, lupus causes the immune system to malfunction and lose its ability to distinguish between viruses, bacteria, foreign materials, and its own cells, which may—as in Luis’ case—initiate an enormously misguided, aggressive attack on the body’s own tissue and organs, including joints, kidneys, heart, lungs, brain, blood, or skin.

In the year leading up to his diagnosis, Luis, then 18, struggled to function as a result of relentless fatigue. His twin sister had recently contracted mononucleosis, and the family’s pediatrician incorrectly assumed Luis had the same. For more than seven months, he experienced 102-degree fevers daily, “bones that felt like glass,” and bowel movements that caused internal tearing. A faint rash also began to spread across the bridge of his nose. This was the most-salient feature of the disease, the symptom that gave it its name. In the 13th century, a physician used the word “lupus,” Latin for “wolf,” to describe this facial rash, likening it to the reaction to a wolf’s bite. 

Pain Becomes Too Much to Ignore

Despite this widespread constellation of undiagnosed pain sensations, Luis managed as best he could, staggering through his day-to-day responsibilities. Based on how he felt, Luis imagines he must have looked far older than his years when he crossed the stage for his diploma at his high school graduation. Nonetheless, he soon began a job as a machinist apprentice for a private military company, physically demanding work that was impossible for him to sustain.

This surrender did not come easily to Luis, whose family is originally from Monterrey, Mexico. He admits, “It was my cultural mentality. My thought process was, ‘If I’m not dead, I can go to work.’” After four months at the job, his pain eventually shattered his stoicism, and he asked his mother to drive him to University Hospital in San Antonio, Texas, because he was too weak to take himself.

A Surprising Diagnosis

When Luis initially described his pain, physicians were baffled by the smorgasbord of symptoms and, perhaps because he is a man, didn’t initially consider lupus. In fact, 9 out of 10 adults diagnosed with lupus are women. 

Slowly shaking his head, Luis recalls, “It was one of those moments where I felt they didn’t really believe me. I broke down.” Ultimately, doctors heard his pleas, took his history, and admitted him to the hospital. After administering a series of exams, including an antinuclear antibody test (97 percent of people with lupus will test positive for ANA), his medical team was startled to realize that, when considering the results in combination with his symptoms, their patient had systemic lupus.

During Luis’ hospital stay, medical personnel were intensely curious about his condition and often stopped by his hospital room to observe and take notes: “The idea that I was a male with lupus was so surprising and rare,” he says. “I felt like a zoo animal.” 

In recent years, autoimmune disease research has increased significantly, but diagnosing SLE is difficult because of the disease’s capricious nature. Thomas Sweeney, DO, an emergency medicine physician in Mishawaka, Indiana, who is also trained as a rheumatologist, acknowledges this complexity: “Typically, there is a delay in diagnosis because symptoms are all over; one year it’s a skin rash, another it’s arthritis, and then finally you realize: ‘Oh, it’s lupus.’”

Luis’ ethnicity also increased his susceptibility to SLE. According to a recent study, lupus is most prevalent in males among Black men, followed by Hispanic men.

Working Hard at Healing

In 2015, Luis completed chemotherapy and rehabilitation. The treatment was a success, and the disease is currently still in remission. To his doctors’ surprise and delight, Luis no longer requires medication for symptoms, though he does still experience arthralgia, or joint pain. His body is certainly ravaged by the effects of active lupus; for example, his kidneys will never fully recover from reaching Stage 5 renal disease. The good news is that while the organs have deteriorated, they aren’t worsening. Referring to the state of his kidneys, Luis says playfully, “They’re not the nicest looking, but they work.” 

Today, particularly on account of COVID-19, Luis, 26, is vigilant about caring for himself and making lifestyle choices that ward off triggers. Still, these protective measures, like the disease itself, are not always entirely straightforward. Although Texas’ warm climate softens the ache of his joint pain, cell damage due to UV radiation exposure is especially prominent in people with lupus. In healthy bodies, the immune system clears away damaged cells, but the process is much slower in those with lupus, and the lingering dead cells may provoke an immune system attack. Luis has adapted in part by securing a remote job working in data entry for Texas Medicaid, allowing him to work entirely from home. He doesn’t go out too often, adding that a bag of rice can last him three months. 

In spite of these restrictions, Luis doesn’t feel confined by the measures he has taken to maintain his health. In addition to completing high-intensity training workouts at home, he reads fantasy, especially J.R.R. Tolkien, and gets at least seven hours of sleep a night. Luis also swears by the changes in his eating habits, increasing his vegetable (though not brussels sprouts!) intake and removing oil from his diet—he’s lost 40 pounds in the past year. This means turning down his mother’s often-heaping portions, though he does still enjoy her signature Mole sauce and, on occasion, he’ll have tortas. “Your body puts out as much as you give,” he says. “If you give it something more pure, healthy, it gives you a better outcome.” Luis is certainly self-reliant, but he is also bolstered by the nourishing support of his girlfriend, Abeer, as well as his large family, including his five siblings.

Guided by A New Strength: Compassion

Luis believes having lupus changed his perspective and has made him a kinder, more empathetic person. His experience with the disease dislodged deeply embedded beliefs that he now sees were not helpful to him or to those he loves: “There was a big sense of machismo—a big sense,” he recalls. Whereas he used to say to himself and others, “Hey, get over the pain,” now he asks people who are hurting, “How bad is your pain—do you need something?” 

Luis speaks softly, his gaze revealing the strength of someone who faces pain with both humility and a willingness to focus on what he can do to heal—both himself and those around him.

—Sara Walsh