When Your Body Becomes a Mystery: Living with a Rare Autoimmune Disorder (Undifferentiated Connective Tissue Disease)

Fatima Megala Nathan

Imagine winning the lottery—but instead of a life-changing jackpot, it's a severe and rare autoimmune condition that affects just 2 in 100,000 people. Add to that a host of baffling symptoms that have left specialists in two different countries scratching their heads. This is my reality. A journey filled with unanswered questions, ongoing medical investigations, and a daily fight that demands strength, patience, and hope.

My name is Fatima Megala, and I live alone while working full-time as a research fellow in public health. Just a few years ago, I was an extremely active, fit individual. Today, I’m navigating a world that changed almost overnight. The Beginning of a Mystery

Three years ago, things started to shift. I began to lose weight rapidly. My menstrual cycle abruptly stopped—a condition doctors labeled “premature menopause,” though I never experienced any of the usual symptoms that come with it. Then came the swelling. One morning, I woke up with severe edema that had spread all the way to my thighs. My legs tripled in size and throbbed with intense pain.

Referrals followed—to a gastroenterologist and one of the top vascular surgeons in the country. Countless scans, scopes, and tests later, I was told I might have vasculitis or ulcerative colitis. My veins were sealed in an attempt to manage the swelling, but the inflammation and pain remained. Despite these interventions, my legs grew heavy and my mobility declined. Walking became painful. Running was no longer possible. Eventually, the specialists gave up. I was a “mystery case,” and sent off to a government hospital. The Struggles That Followed As time went on, things worsened. I developed intense fatigue, nerve pain, and muscle stiffness that turned my lower limbs into something that felt like stone. Getting out of bed became a struggle. Yet, I continued to work full-time, juggle hospital visits, and manage my daily life the best I could.

Multiple surgeries and biopsies yielded no clear answers. My weight continued to drop. My pain persisted. Eventually, a third hospital assembled a team of seven senior specialists. Even they were stumped. After countless tests, I was finally diagnosed with undifferentiated connective tissue disease—a broad, catch-all diagnosis for something still not fully understood. Today, only three specialists remain by my side, trying to untangle the complexity of my condition. My weight remains dangerously low. My legs still feel like they’re encased in concrete. And although medications, including hydroxycloroquine and pregablin, have helped reduce some of the pain, they’ve never taken it away completely. Finding Strength in the Unknown Despite the physical toll, I’ve refused to give up. Through physiotherapy, yoga, strength training, and the unwavering support of friends and family, I’ve found ways to cope. Not just physically, but mentally.

And that’s why I’m sharing my story. Why This Matters

From the outside, people with my condition appear “normal.” My condition isn’t always visible unless my legs are exposed. So, when I move slowly or need a seat on a crowded MRT, people sometimes stare—or worse, judge. But what they don’t see is the chronic pain, the fatigue, the years of medical uncertainty behind every step I take.

Living with a rare disease comes with more than just physical pain. It brings emotional exhaustion, financial strain, and at times, isolation. Many tests, treatments, and medications are not covered by public healthcare, especially for rare autoimmune conditions like mine. And that means many people may be silently suffering, unable to afford a proper diagnosis—let alone treatment. A Call for Awareness and Advocacy

I don’t share this story for sympathy. I share it to raise awareness—for myself and for others navigating the hidden world of rare and chronic autoimmune disorders.

We need more empathy. We need more public support. And most of all, we need a louder voice—not just a whisper—in the conversation around invisible illnesses. With collective awareness, we can push for better healthcare access, more research, and greater understanding.