Lupus can be easy to overlook at first. Early signs like fatigue and joint pain are often dismissed or mistaken for something less serious. Lupus, an autoimmune disease where the immune system attacks healthy tissue, is often called an “invisible illness.”
In part one of our lupus series, we explored what lupus is, who it affects, and how it’s treated. Now, we’re taking a closer look at what it’s like to live with the condition day to day through the experience of Karen Ng. Ng is a Hawaiʻi-based lupus advocate, Lupus Foundation of America ambassador, and founder of LANtern® (Lupus Asian Network), the nation's first lupus education and peer support program created specifically for Asian Americans and their families. For Ng, living with lupus has become a journey of resilience and a mission to ensure others never have to face the disease alone.
Ng volunteers at many events, answering questions and raising awareness.
A diagnosis that changed everything
Ng first noticed symptoms in 1999, when she was living in New York City in her 20s. What began as fatigue and swollen fingers didn’t immediately raise alarms. “I felt unusually tired and run-down, but I chalked it up to the fast pace of city life,” she says.
As weeks passed, her condition worsened. Everyday tasks became exhausting, and even getting through a workday felt like a struggle.
A blood test revealed dangerously low red blood cell levels. Her doctor sent her to the emergency room, where Ng was diagnosed with systemic lupus erythematosus and lupus nephritis, a serious form that affects the kidneys. “Before that moment, I had never even heard of lupus,” she says. “I had no reason to suspect anything was wrong with my kidneys because lupus nephritis causes no pain or noticeable symptoms. But after months of dismissing my symptoms because they seemed minor, it took a medical crisis to reveal what was happening to my body.
Living with an invisible illness
One of the biggest challenges of lupus is that its symptoms aren’t always obvious. “Most of us know what it feels like to be tired, but lupus fatigue is something entirely different,” Ng says. “Going to bed early doesn’t fix it. Coffee doesn’t fix it. Even after hours of sleep, the fatigue was overwhelming.”
There’s also brain fog, which affects concentration, memory, and decision-making. “It can feel as though a heavy fog settles over my mind,” she says, “making it difficult to process information or think as clearly as I normally would.”
Beyond the physical symptoms, Ng says that one of the hardest parts of living with lupus is the uncertainty. Symptoms may ease one week and return the next, sometimes without a clear trigger. “One day I can be active and energetic, and the next I may barely have enough energy to get out of bed,” she says. “There's often no clear explanation for when a flare will occur, how severe it will be, or how long it will last.” That unpredictability can take a psychological toll, and stress is a known trigger for lupus flares.
Because lupus can affect virtually any organ in the body, Ng has also learned that feeling well doesn't always mean the disease is inactive. Inflammation can occur silently, sometimes without noticeable symptoms, and over time can lead to irreversible organ damage if left unchecked. “Living with lupus means paying close attention to your health,” she says. “Regular monitoring, staying on top of medications, and listening to your body are essential, even when you think you're doing okay.”
On the outside, Ng may appear perfectly healthy. “During flares, I may look fine on the outside while struggling internally,” Ng says. “People living with lupus are sometimes misunderstood or expected to push through symptoms that others can’t see. The real battle is happening beneath the surface.
Participating in hikes and walks on behalf of lupus and other important causes keeps Ng active.
Building resilience
Over time, Ng has learned to adjust her lifestyle and mindset to better manage her health. “I’ve learned that taking care of myself is an ongoing commitment,” she says. “I make sure to prioritize rest, maintain a balanced routine, and focus on the 3 S’s each day: sweat, sleep, and smile.”
Equally important has been a shift in her perspective. “Lupus taught me that some things simply cannot be controlled or fully explained,” Ng says. “Instead of striving for control, I focus on how I respond to challenges.” Giving herself grace and adapting when needed have become essential to managing the disease. That resilience eventually allowed her to shift her focus from simply surviving lupus to helping others navigate it with greater knowledge, confidence, and hope.
Turning personal experience into advocacy
After her diagnosis, Ng searched for information and support but found few resources that reflected the experiences of Asian Americans living with lupus.
“How we view illness, mental health, and asking for help is often shaped by our cultural beliefs, family expectations, and values,” she says. “These influences can make an already difficult journey even more challenging."
Determined to change that, Ng founded LANtern® (Lupus Asian Network) at the Hospital for Special Surgery in New York City in 2003. The program provides culturally relevant education, peer support, and community for Asian individuals and families affected by lupus.
“What began as a way to help others feel less alone became one of the most meaningful parts of my life,” she says.
After moving to Los Angeles, Ng continued her advocacy through the Lupus Foundation of America (LFA), where she became an ambassador and national facilitator of the Asian Community support group. Today, this monthly LFA support group attracts members from across the U.S. and Canada.
“Advocacy, for me, means transforming personal challenges into opportunities to educate, connect, and empower others. If sharing my story helps even one person seek care sooner or realize they aren't alone, then it's worth it.
Ng hopes greater awareness will lead to earlier diagnoses, stronger support systems, and more understanding for people living with lupus. “Making lupus visible is about recognizing the experiences of the people living with the disease. When we listen to their stories, believe them, and create communities where they feel supported, we replace isolation with connection,” says Ng. “In Hawaiʻi, where caring for one another is such a deeply rooted value, that's one of the most meaningful ways we can make a difference.”
Finding the beauty and healing in nature.
Finding information and community
Learning about lupus can help you recognize symptoms early and support those living with the condition.
- Lupus Foundation of America
Offers education, support, and advocacy resources. - Hawaii Rheumatology Society
Provides information about rheumatologic care in Hawai‘i. - National Institute of Arthritis and Musculoskeletal and Skin Diseases
Shares research-based information about lupus and autoimmune diseases.
You’re not alone
From autoimmune diseases to mental health challenges, many people live with conditions that aren't always visible to others. These stories explore health, resilience, and the importance of support.
- a new line of support for youth mental health
- anxiety awareness month
- chronic inflammation: silent and destructive
- how to choose the right care
- irritable bowel syndrome awareness month
- maternal mental health: support and healing
- menopause awareness month
- national suicide prevention month part I and part II
- pearl haven: a refuge and healing center for youth
Photos courtesy Karen Ng
