ILOILO City – May is Lupus Awareness Month, and this year’s theme, “Let’s Make Lupus Visible Together,” seeks to shed light on the invisible battles faced by people living with this chronic autoimmune condition.
With the World Health Organization (WHO) estimating that at least five million people around the world live with lupus, and the Department of Health (DOH) recognizing autoimmune diseases like lupus as among the most misunderstood and underdiagnosed conditions in the Philippines, visibility is no longer a request — it’s a demand.
Three women from Iloilo and Antique — each living with systemic lupus erythematosus (SLE) — are breaking their silence and stepping into the light to give this disease a face, a voice, and a story.
‘I am my own patient’: A doctor’s diagnosis
For Dr. Jane Frances Retiro, a hematologist from Iloilo, the moment she was diagnosed with lupus was life-altering.
“After learning about my diagnosis, I had immediately accepted the ‘verdict’,” she recalled. “In retrospect, I actually skipped the first three stages — denial, anger, and bargaining — of grief. But I did eventually find myself feeling sad, maybe even depressed. It wasn’t a straight line from diagnosis to acceptance.”
Now living with lupus for nearly 13 years, Dr. Retiro continues her medical practice, often diagnosing patients with lupus even before they know it themselves.
“My familiarity with the disease, and having ‘lived’ it myself, has honed my diagnostic acumen in spotting a possible kindred spirit. As a hematologist, I see many lupus patients even before a definitive diagnosis — usually due to abnormal blood counts,” she said.
Despite the chronic nature of her condition, she emphasized the value of resilience: “Most days, I forget that I’m not perfectly healthy anymore — except during the summer when the extreme heat reminds me so. Yet unavoidably, moments of dread still assail me, albeit fleetingly.”
Her greatest transformation as a physician? Empathy.
“It’s not about being right or getting the perfect diagnosis. It’s about understanding. When a patient says, ‘I ache all over and feel tired all the time, Doc,’ I know exactly what she means. I’ve been there. That brain fog, that exhaustion — it’s real. And I want to be the voice that validates them,” Dr. Retiro stated.
She also shared how sun protection, diet, and managing stress are vital to daily survival.
“The healer must heal herself first before she can heal. I’ve had to be more mindful — time my rounds at dawn, wear protective clothing, avoid stress, mask up. Even the food I eat is now calculated to help prevent flare-ups,” she added.
‘We’re stronger than the sun’: A public servant’s mission
For Sangguniang Bayan member Rhia Sotomil of Pavia, Iloilo, lupus runs in the family.
“My elder sister was diagnosed three years after me. I believe our lupus is a combination of genetic and environmental factors — medications, infections, and especially stress,” she said.
Her warning to others is grounded in personal experience.
“Symptoms of lupus may start in early adulthood between ages 15 to 44. My joint pain — I thought it was just arthritis from being athletic in my younger years. It got worse over time until I finally sought real medical help,” she shared.
Rhia is candid about her triggers: “Sun exposure is a big one. About seven in 10 people with lupus are photosensitive. For me, stress and a lack of sleep also make things worse. UV light causes more than sunburns — it can ignite the storm inside your body.”
She also had a message for those with a family history of lupus:
“Be proactive. Eat healthy, manage stress, avoid smoking and drinking. If you have a family history, early checkups and intervention can make all the difference.”
‘We rise and show up’: A working mom’s battle cry
Leah Fajardo, a working mother of two, described her diagnosis as both confusing and frightening.
“In 2014, I was diagnosed with Mixed Connective Tissue Disease. But after giving birth to my youngest in 2019, everything changed. I thought I had postpartum issues, but the pain, panic attacks, and fatigue became unbearable,” she said.
By 2022, she was diagnosed with SLE.
“I’ve been living with lupus for three years now. Every day is a different struggle.”
Leah identified several triggers: “Direct sunlight, even indoor lighting, stresses me out. I work under dim lights. Even walking too far exhausts me. And anxiety comes easily, especially when I feel something unusual.”
During flare-ups, she has learned to adapt.
“I had trouble swallowing. I couldn’t even drink water. I lost five kilos in two weeks. But now I’m recovering slowly. I only work according to what my body can take. I can’t stop working, but I pace myself,” Leah said.
What keeps her going?
“My best weapon is prayer. I always ask for God’s guidance and protection. I pour out to Him all my sorrows, and He gives me strength,” she said.
She lives by a new mantra: “All these shall pass. Acceptance is key. I stopped pushing myself. I eat right, take my meds, exercise in small ways — like taking the stairs or walking through the grocery. I cherish my time with my children and let go of complicated work tasks.”
To newly diagnosed patients, she offered this message:
“You may see us okay on the outside, but we fight in silence. We never know what symptoms will come tomorrow, but we rise and show up. Just let the flows flow. Carry that backpack of hope — it’s heavy, yes, but still worth carrying.”
Making the invisible visible
Lupus affects people differently — some may experience organ damage, others battle constant fatigue, memory issues, or unrelenting pain. And yet, they are often dismissed as “overreacting” or “just stressed.” That’s what makes this year’s theme so powerful.
According to WHO, lupus is among the leading autoimmune diseases globally, affecting predominantly women of childbearing age. In the Philippines, exact figures are underreported due to misdiagnosis and stigma.
This May, as patients, advocates, and physicians call for awareness, the goal is clear: visibility.
Lupus may be invisible, but its warriors refuse to be. In every sun-shielded walk, every quiet ache, and every flare survived in silence, there is strength. Through their stories, we are reminded that awareness is more than a campaign — it is an act of survival, compassion, and community./PN
